FLARE, FLARE, FLARE ~~~ BIG TIME

What brings on a Lupus flare?  No one (medical community) really knows what brings a flare on. 

One web site says:

What can trigger lupus?

It is believed that certain things may trigger the onset of lupus or cause lupus to flare, these include- Ultraviolet light, certain prescription drugs & antibiotics, infections or viruses, hormones & stress.

There are a myriad of things that can cause a flare.  I never know what is going to trigger one or when one will occur.

So right now I am hurting.  I am experiencing paralyzing fatigue.  My head is pounding.  My mouth is full of sores.  And my bowels are going crazy. 

I can't take much more of this.  I am going crazy.

Tags: lupus, lupus flare, lupus symptoms

LIFE IS GOOD ~~ SO WHY?

Life is good.  We are building our dream house.  I am here in SC with my family.  Holidays are wonderful because we get to spend them with my brother and his wonderful family.

So could someone please tell me why I am sad.  Why am I crying all the time?  Why am I so irritable? 

Warfare

For the last few weeks I have been battling my illness.  Mostly it's the fatigue that is causing heightened problems.  But, with this fatigue comes the intense pain.  It's concentrated in my legs.  Both bone and muscle pain.  Although my hands and arms are beginning to give me fierce pain in those areas as well.  Plus, I have a sinus infection and a urinary tract infection.  The antibiotics are giving me horrible diarrhea.

These days I cry often.  I'm really tired of this warfare that I have going on with my own body.  This illness that has no cure.  Walking is harder these days.  Everything is harder these days.

I'm still not feeling great.  But, this morning I did wake up in a lot less pain.  What is great is that I (at least for now) think I found a good combination of meds to help with the pain.  When I tested positive for RA, my NY rheumi prescribed 750mg of Nabumetone.  I take two in the morning and two in the evening before bed.  I hadn't been taking some of my pain meds.  I couldn't handle the grogginess.  This med is not a narcotic.  Nabumetone is a nonsteroidal anti-inflammatory drug (NSAID) effective in treating fever, pain, and inflammation in the body.  Nabumetone is used for the treatment of inflammation and pain that results from  rheumatoid arthritis and osteoarthritis.

Here is more info on this med:  http://www.medicinenet.com/nabumetone/article.htm

Taken with two 5 mg Oxycodones I feel so much better.  It's only been one or two days with this combo and I really hope it lasts.  I hope it last just enough for me to get my life back.

What gets me about these things I have is that it not only affects me, it affects everyone around me.  Everyone's life has changed since I got sick.  My family has had to pick up the slack here.  My inability to do things has always bothered me.  But, it bothers me more now because even though Gary comes home every night from building our house like a cripple, he still has me as his top priority.  As much as he is hurting or is tired, he still has no problem doing stuff here.  I feel horrible leaving anything for him.  Unlike NY, here there is no delivery of food.  No ordering Chinese or Towne Deli subs.  No good pizza.  He doesn't stop to eat during the day therefore I want to make sure there is a home cooked meal for him when he gets home.

The thing that upsets me the most is lately my mood has been very tense.  You see when my lupus flares it's as if my brain is surrounded by this dense, crazy fog.  I lose all ability to verbalize rationally.  I get snippy and short tempered.  I lash out.  I wish that I was able to control it, but I can't.  Even though I apologize it hurts me that I hurt those that I love.  This causes me be depressed.  Don't get me wrong I don't feel sorry for myself, I feel sorry for those I am hurting.

What happens is that I try to think or respond and I break out in a sweat and start to shake.  I hate it.  I hate what it does.  Today I hate these illnesses.  I am so tired.

The only good thing that is happening (of course, aside from my dream house) is that for some unknown reason I am losing weight.  No dieting.  No watching what I put in my mouth.  The pounds are just melting away.  The last time I weighed myself I was down almost 60 pounds.  My clothing is actually falling off of me.  The other day I had on a pair of jeans that were falling off as I walked up the stairs. Maybe I will be back to my pre illness ideal weight.

I slept pretty well last night.  My legs and hips did not burn as much.  Pretty little actually.  I only woke up three times and actually feel rested this morning.

Have a great day gentle readers.  Please keep me in your prayers.

Hugs, Lu

The last few days have been quite crazy.  I wasn't feeling well at all this weekend.  My back was killing me.  I mean really killing me.  I was afraid that it was because I was weaning down off the duragesic patch.

Then sometime Sunday night I was woken up with the most intense, stabbing, throbbing, killer pain in my back.  It was just below my rib cage on both sides and radiated to the front.  I had no clue what was going on.  I ended up taking two extra pain pills and then going to the bathroom and it went away as quickly as it came.  But it lasted about three hours.

I woke up on Monday morning feeling really great.  I took Lauren to work, stopped by to see how the land clearing was going, stopped by to see Carol, my sister in-law, went to Walmart, the thrift store and the health food store.  In the car on the way home that pain returned with a vengeance.  I don't even know how I managed to get up the stairs to the apartment.  But I decided to work through the pain and empty the dishwasher, make my bed, fold some clothes, etc.  Then the pain intensified like 100%.  Same place as the night before.  I started to get a little scared as I remembered my NY rheumi telling me that he was getting concerned with my kidneys.  There was blood and protein in my urine and some of the blood work came back off.  Not bad enough to warrant further testing yet, but just a cause for concern and to wait and see.

Then I started feeling nauseous and vomited.  In the bathroom my legs gave out from the pain and there I was laying on the bathroom floor.  I couldn't manage to get up because the pain was just so intense.  I called for my son for like 10 minutes but he didn't hear me.  I managed to crawl into my bedroom and continued to call for him.  By the time he heard me I was riling around the floor screaming in pain.  The poor kid thought I was having a seizure or another stroke and called 911.

All the while in my head I kept thinking that my kidneys were failing.  The paramedics arrived and took my vitals.  I had a low grade fever and my blood pressure was very high.  I don't remember exactly what it was but I think the top number was 180 or something like that.  They brought me over to the hospital.  During the 1 minute drive there the pain was mostly on my right side.  He paramedic said....... classic kidney stones.  He's seen it a million times.

At the hospital the doctor said the same thing.  I was given something for pain and nausea and whisked off for a CAT scan.  Let me tell you this, this hospital is amazing.  The CAT scan results were back in less than 30 minutes.  It showed my urethra was dilated and another stone in my kidney.  The doctor said I passed at least two stones because I had two of these episodes.  He also said the one in my kidney shouldn't give me any problems.

I feel fine now.  It's amazing how quickly you feel better after passing a stone.

But this is the worst pain I have ever had in my life.

Tags: kidney stones, Palmetto Baptist Hospital

I'm in another episode.  I hate to call it a flare because I could (and hope to) wake up tomorrow morning and feel fine.  But for the last week or so I have been feeling horrible.

I'm quite sure that it's the APS that is acting up again.  My INR levels have not been therapeutic for a few weeks.  First high and now low.  Two visits to the ER.  Two sets of blood tests and two CAT scans.  One set of each for high levels and then on Saturday another set for low levels.  Each time it was head pain that sent me to the ER.  Also because I have yet to obtain a doctor.  I do have an appointment on 10/2.  Hopefully one of the physicians recommended by the the ER doc will see me this week.

What drives me crazy is that when I explain that I have APS (among my other crap) I get that look.  That puppy dog head tilt thing.  It's frustrating to get that look from a physician.  Also, when my blood levels come back I am told that 2.2 is fine.  Yup, fine for those with artificial valves but not those with APS.  Again the puppy dog tilty thing.

So, this evening I scanned my medical records and found the printout from the coumadin center in NY.  This printed listed all my visits, what my levels were and the daily dosages.  I found a period on the printout that had the same basic levels I have now.  I'll follow that dosage schedule for now.

I am so frustrated.

Antiphospholipid Syndrome (APS)

Good Morning!!

I'm not feeling very well today.  I believe that mostly it's the heat that has brought on this flare of sorts.  We have been having record breaking temps of over 100 degrees.  Aside from my usual flare symptoms, I've developed extremely bothersome rashes underneath my breasts.  Therefore, I am going to stay indoors until this heat breaks.  Thank God for my son who will be driving my daughter to Anderson today for her training.  Thank you Sweetheart!

I want to talk a little bit about Hughes Syndrome.  Otherwise called Antiphisiploid Syndrome.  You can read about it at http://www.hughes-syndrome.org/.

Way before we even knew I had Lupus or RA I had fibromylagia.  Then I started to experience very strange neurological symptoms.  It was hard for me to explain these symptoms to my doctors.  They were sort of like facial tingling but only on the left side of my face.  What would happen is I would begin to feel pulling above my left cheek and this pulling would travel down the left side of my body.

Once I could put this into words my rheumi at the time asked me to remove my shirt and she examined my arms and breasts.  What she saw there looked like a webbing of sorts underneath my skin.  I never thought anything of this as it has been there most of my life as far as I can remember.  She asked me a million questions.  Questions about my pregnancies especially.  Both of which had been riddled with complications.  She ordered blood tests for what she called Antiphisiploid Syndrome.  This doctor explained what APS was and she was sure that I had it.  Sure enough the blood tests came back positive for APS and the Lupus Anticoagulant (which is not Lupus).  Monthly blood tests continue to confirm this dx.

I was put on a baby aspirin a day but my symptoms continued. I was put on Plavix but still I experienced symptoms.  Then I took both aspirin and Plavix.  My symptoms lessened but did not disappear entirely.

Otherwise I felt fine.  My fibro was pretty much under control and aside from these other symptoms which occurred only periodically I went through my life feeling fine.

I need to add at this point that during that period of time in my life, I was the perfect weight.  Ate a high fiber, low fat diet.  Drank at least 8 glasses of water daily.   I didn't exercise regularly, but was very active and walked a lot.

One day (it was May 13, 2003, I remember that day because it was the day before my 45th birthday) on my way to work I started to feel these symptoms again.  This time they were very pronounced.  I was driving and almost at work so I continued on my way to work.  In the elevator on my way to my office my coworker told me that I looked horrible and very pale.  I worked at a nursing home and had to pass the nurse's station on the way to my office.  One nurse, Pat, noticed me and sat me down.  By that point I could hardly speak and was very confused.  What happened after that is somewhat of a blur.  All I know is that I was later told that my blood pressure was something like 210/170.  911 was called and I was rushed to the ER.  Thankfully, my supervisor (the administrator of the nursing home) knew the administrator of the local hospital ER.  So he called ahead and explained my medical history of APS.  I was given TPA and some other IV things.  My condition stabilized and was admitted.

It was decided that I needed to be on Coumadin which is a blood thinner.  It is the prescribed treatment for APS.  But until my INR  (International Normalized Ratio ~ the level of anticoagulant/blood thinner in a person's blood) became therapeutic I remained in the hospital on a heparin IV.  I think I was in the hospital for a week maybe less.  It was agreed that I had a stroke.

Thankfully I was not left with any serious deficits.  Minor left sided weakness and a seizure disorder which they are still not sure was caused by the stroke or the APS.

To this day whenever my INR goes too low I start to experience those symptoms. For the last five years I have had my INR levels monitored regularly.  I even have a monitoring device here at home.  http://protimetest.com/  It's done with a simple finger prick.  I get my INR and PTT levels.  But after all this time I know before hand just by the way I am feeling if my levels are too low or too high.  Both of which are not good.  With a low INR I am at risk for throwing a clot.  An INR that is too high can cause internal bleeding. When this happens I have a headache and bruise easily.  My gums will bleed when I brush my teeth.

APS has been misdiagnosed as MS.  Here is a portion of the above mentioned web site:

Hughes Syndrome (APS) is sometimes called 'sticky blood syndrome'. This is because people with it have an increased tendency to form clots in blood vessels (also known as thromboses). Any blood vessel can be affected including the veins and the arteries.

The main symptoms of Hughes Syndrome can include any of the following:

Headache or migraine	Giddiness
Memory loss	Visual disturbance
Skin disorders	Thrombosis - DVTs
Heart attack	Stroke
Pulmonary embollism	Multiple Sclerosis-like features
Gastrointestinal disorders	Pregnancy problems

Only until recently (maybe a year) has my INR levels remained therapeutic.  Diet and other medications can cause a person's INR (while they are taking blood thinners {not Plavix}) to become unstable.  Eating too many leafy green veggies (Vitamin K veggies) like spinach lower your INR.  Taking aspirin or Ibuprofen.

Because I later developed Lupus and RA and had to be on more medications my INR levels were very unstable for quite some time.

Now that we have moved and have yet to fine a doctor to take me as a patient, I have been self testing.  I got the name of a doctor in the area who may be accepting new patients as well as a local Anticoagulation Center from my next door neighbor.  She is also the apartment complex manager.  I plan on calling them later on today.

In the Hughes Foundation web site it says that once INR levels are therapeutic symptoms disappear.  I believe this to be true.  I was also told that the cognitive dysfunction will not repair itself.  But I am on Memantine (http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a604006.html) and it has helped to avert any further damage to my brain cells.  My brain is full of lesions.

I was still convinced that I also had MS.  And, after many conversations with my neurologist it was agreed that I needed further testing.  My MRIs showed the lesions but she ordered a SPECT scan ( http://www.precisionradiotherapy.com/PE-SPECT.htm) which showed cerebral vasculitis but no MS.

It's important that anyone with any of these symptoms be tested.  Especially if you have livedo reticularis.  Here is a picture of it.

Read through the Hughes Syndrome web site.  Or do a search for antiphospholipid syndrome (APS).  It was very helpful for me.

Tags: Antiphospholipid Syndrome, Hughes Syndrome, Hughes Foundation, Coumadin, INR, Anticoagulation, Atypical MS Symptoms

Both of my children have gotten jobs.  We have only been here three weeks.  This is good.  Everyone appears happy.

But me.  I have pushed my body to the limit.  Both physically and emotionally.  Now I am living in flare land.  I knew it was coming but I ignored the signs.  This morning I woke up a mess.  Aside from the pain and fatigue, my head was/is a mess.  Very foggy and confused.

I slept most of the day.  I hope this doesn't last long.  I've yet to find a doctor.  If things continue and I still feel this sick I might just go to the ER.  I think that is the simplest way to find a doctor.

On a better note, my sister's visit was really nice.  It was great to see her.  It was even nicer for all of us to be together.  We did a lot.  Last night we all went out for dinner and then to an amusement attraction.  I played skey (sp?) ball.  We didn't get home until about 1 am.  We spent most of our time at my brother and sister in-law's house.  My sister in-law, Carol, is a great cook.  I was amazed the other day when she whipped up king crab legs, shrimp scampi, fried flounder and scungili in no time at all.  And, it was so delicious.

I'm sure that the pace I have been keeping up these last three weeks has attributed, if not caused, this flare.  If a flare is ever worth it, this one is.  Because I really did have a great week.

Hugs, LuAnne

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.

Karyl's Weather Meme

This is from Karyl's Glimpses of Eternity.  I met Karyl on the Lupus General Discussion board, oh it has to be four years now.  Karyl is always so supportive and very upbeat.  I am happy that she is my friend. 

 

Karyl’s Weather Meme

1.     What is the most beautiful weather component you’ve ever seen?   While driving back from South Carolina last May the sky was an amazing blue.  Blue as I have ever seen a sky.

 

2.     What is the scariest weather component you’ve seen in person?   When I was about ten or so we had a very bad blizzard.  My father being the way he was, sent my sister Kathy and I out to start to shovel.  The blizzard was raging with winds so strong I don't even remember the speed.  All I remember is trying to get back in the house.  Kathy is three years younger than I am, so she was probably about 7.  She is a tiny little thing.  I remember walking with her facing me and holding on to me so that the winds didn't pick her up.  She must have been all of 45 pounds, if that much.

 

3.     What’s your favorite art with weather in it?  I can't think of anything right now.

 

4.     What’s your favorite movie with weather in it?  The Day after Tomorrow.

 

5.     Favorite book with weather in it lol? Got me?

 

6.     What type weather is your most favorite?  I love it when we are all safe and sound at home and a blizzard is raging.

 

7.     What weather makes you want to leave your state for the day when it arrives?  Hot and Humid.

 

8.     What is your weather today?  Today was beautiful. I had all the windows in the entire house open.

 

9.     What was the worst weather you’ve had this year?  That NorEaster we just had.

 

10.    When the weather is so bad you can’t go out, what favorite activity do you do inside?  Cuddling on the couch with Hubby.

 

11.    If you could order your weather, what would you order for tomorrow?  60ish, some sun and wind.

 

12.    If your family could make the weather happen by voting, for what weather would the majority vote?  The kids still like a snow day.

 

13.    If you could have only one weather temperature and style, what would it be?  High 50's, some sun and wind.

 

14.    If you were stranded somewhere remote because of weather and could have the famous rescuer of your choice, who it would be?  Horatio Kane from CSI, Miami.\

 

Thanks Karyl, that was fun.

NEW JOURNAL

I am writing a new journal which will document our experiences while planning, moving and building our dream home in South Carolina.  Please stop by and visit.

http://journals.aol.com/thebaabee/so-you-think-you-want-to-build-a/

Hiya,

As many of you know I will be moving in a little over three months.  There is so much to do.  And, with my current health condition it's going to take a toll.  I'm going to have to turn off all of my journal alerts for a while.  Please don't get angry at me.  I'll be checking when I can.

Wish me luck, Lu

What's in a name?

I found this meme/game in Dawn's Journal.

Use the first letter of your name to answer each of the following... They MUST be real places, names, things... 

NOTHING made up!  If you can't think of anything, skip it.

You CAN'T use your name for the boy/girl name question.

Your Name:  LuAnne

Famous Music artist/group:  Led Zeppelin

3 letter word:  Lip (good for kissing)

Color:  Lavender

Gift/present:  Lladro

Vehicle: Dawn said, DeLorean.  I actually met him while working at a PR firm in the very early 80's.  Actually while he was dating Christina Ferrera he sent me roses.  My "L" is Litecraft, which is an RV

TV Show:   Loretta Young Theater (I was about four or five and after my Mom put my sister in for a nap (she was a baby and Mom was pregnant with my brother) we would lay on the couch.  She would lay on her side and I would cuddle up and rest my head on her legs.  I remember sometimes her legs were stubbly, LOL.  It is one of the best memories I have.

Country:    Luxembourg, it's surrounded by Germany, France and Belgium.

Boy's Name:   Louis (my paternal grandpa's name) I loved him dearly

Girl's Name:   Lauren, of course.  My precious daughter

Alcoholic drink:  Lucasta Martini (a yummy blend of vanilla liquors)

Occupation: librarian (actually forensic librarian)

Flower:   Lilac

Celebrity:    Liam Niesen

Food:       Lollipop

Something found in a kitchen:   Linens

Reason for Being Late:  Lupus

Something You Shout:   Lupus (actually an "F" word goes before Lupus)

Try this, it's fun.

WOW, THINGS ARE MOVING SO QUICKLY

I've checked off ANXIOUS on the mood indicator above, but I am feeling so many things.  Happiness, excitement, joy and fear.  The fear comes from the unknown.  We are in New York and there is so much for us to do to get down to South Carolina.  Our tentative move date is on or around the 15th of July.  Before that Gary and I need to go down to finalize some stuff.  Aside from the construction aspect, we need to secure temporary housing.  We have a few choices for that.  We can split the family up.  Some of us could live with my Mom and some of us with my brother.  I am pretty sure that is not how we are going to do it.

We can rent a small apartment and just rough it for the approximately six months the construction will take (I'm thinking more like 7 or 8 months).  Or, we can take over my Mother's apartment and Mom can go live with my brother for a while.  This may be the easier of our choices.

I would prefer to buy a small trailer and move it onto the back of the property and live there.  Mom says that's how a lot of people do it.  But, there seems to be some issues with that.  We need to research that.

Another issue that needs to be taken care of is the matter of my medical care.  Here in NY I see about 8 different medical professionals.  Finding new doctors is overwhelming me.  Mom's friend has a rheumatologist that she sees.  I may just start out with this doctor and then if need be change.  One good thing is that right in the town of Easley there is a Lupus Foundation of America.  And, I am sure that I can get all the help I need from them.  But, if any of my readers happens to live in the Upstate area of South Carolina (I think that encompasses Easley, Greenville and Spartenberg at the least) and has good doctors please send me an email.  I really would appreciate any help on this.  The most important thing that needs to be addressed prior to the move is to ensure that I can have my INR levels monitored.  The INR level is the amount of anticoagulation medication that is in my blood.  It needs to be monitored to make sure it remains therapeutic.  That it is not too low nor too high, both can be disastrous.  Even though my levels never really stay therapeuticfor long, I am spoiled where this is concerned.  For the past four years I have been having my levels monitored at our local hospital.  They have a anticoagulation center.  I simply get my finger pricked and within moments we know what my level is.  I do have one of those monitors and can order the testing strips.  And, I suppose that I can call in the numbers to the center here in NY until I find one there (if there is one there.)

Then there is the matter of my pain management.  I believe that a history report written by my PCP and/or Pain Management Doctor will be okay.

I plan on making an appointment to see that rheumatologist when we go down in May, just so that I can get things in place prior to the move.  I am trying to keep my stress level down because one of the main flare triggers for me is stress.

In my mind I know that everything will work out the way it is supposed to.  That before I know it, it will be this time next year and we will be settled in our new home.

Gary and I are always talking about the move.  What we want.  What we need.  Our philosophy is that we are building a home, and we will put in it what we have dreamed of.  I am an easy person to please.  We want it to be a comfortable home.  A happy place for us to start our new lives.  It's going to be big.  2,800 square feet big.  We are not going to cut corners but are going to be frugal in our choices.  For example, where our kitchen is concerned, we will use ready made cabinetry from Home Depot.  Things like that.

We will be saving a lot of money by Gary and Joseph doing most of the work.

There will be six of us living in our new home.  There are the four of us.  Plus Gary, Jr.'s girlfriend.  It appears that this relationship is serious.  Hopefully, after construction of the house we will be building a separate garage structure with an apartment above for them.  My Mom will be coming to live with us.  There are many reasons for this.  I hate that she lives alone.  For her it will be a good financial move.  But, also for more selfish reasons on my part.  I want to have my Mother with me.  I need to have my Mother with me.  We have taken many things into consideration when laying out the basic plans for the house.  Mom will, of course, have her own room.  In her room will be her own bathroom plus a separate sitting area.  She still needs her own space.  Having her own sitting area will afford her the personal space she might need.  Mom can go and watch her own TV shows.  Or read.  It will be her own personal haven.

There will be a den for the family.  I've always wanted a den area that is separate from the living room.  I want a living room that has no television in it.

Our kitchen will have a pantry.  No use building a kitchen that doesn't have enough space for all the things that go with a kitchen.  Now our kitchen is tiny.

And, of course there will be enough bedrooms for the family and a guest room.  Gary, Jr.'s room will eventually be the guest room.  As soon as the garage apartment is completed.

I want to be able to give my children the opportunity to start off their married lives being able to save for their own home.  With the garage apartment there for them, they will be able to save for a home.  We haven't decided if we will take rent from them and save it for them or leave it up to them to save.  I suspect that taking rent would be the better choice.  It will get them used to having that to pay each month.  And, let's face it most of us don't save what we should if left up to our own device.

As you know we have purchased land in Easley, South Carolina.  We are drawing up house plans and should begin building by August.  Gary and my brother, Joseph, will act as the general contractors.  Most of the building will be done by them.  The only things that will be contracted out are those that are either too massive to do with a small crew or those jobs that need expertise.  The first thing to be contracted out will be pouring the digging out the footprint of the house and pouring the foundation.

If this entry seems garbled, well that is because I feel garbled.

There is so much to do.  But, it's all good things.

Have a wonderful Sunday!

Lu

Tags: Easley, SC, Greenville, SC, Spartenberg, SC, Physicians in the Upstate Area of South Carolina, Joy