Night night my friends.

I know that most of us with chronic invisible illnesses have shared some of the same experiences.  This being said, I am going to share a phone conversation I had this morning.

As many of you know I have not been feeling great during these past few weeks.  I have been experiencing strange headaches.  It actually feels as if my brain is lose in my skull.  And, I feel woozy.  These headaches are not being relieved by my usual "big gun" meds.

I was speaking to a friend who I haven't spoken to in quite a while.  A friend with whom I used to work with.  She called me this morning to see how I was feeling.  I should learn by now to just say "fine."  But I figured since she was calling, she was concerned.  So, I told the truth.

I explained how my body was feeling.  How fatigued I have been and how much my body aches.  I spoke about these new headaches.  And, how they have actually brought me to tears.

Her response to me was that I probably needed new glasses.  While this may be true, I proceeded to clarify my symptoms.  She told me that this happens to her and she just has to wait it out and she feels fine.  She said that her joints hurt her after a long day.  That her memory is not the same.  She said, "Let's face it we are getting older."

During our phone conversation I kept thinking that this woman has no clue what is going on.  That her phone call to me was simply a obligatory call.  At that point I stopped trying to explain my illness.  I decided that it was not worth my energy to speak about this to someone as ignorant as she is.

The sad part of the whole thing is that I was so happy to hear from her.  This phone was supposed to be uplifting to me.  I thought I was past grieving for what has been lost in my life.  I missed my old "friends."  I missed my old life.  In a strange way, I was happy for this phone call.  After it ended I felt relieved.  I felt better about losing my old life.

It made me thankful for those that I do have in my life who understand me completely.  Those who have caught on.  Again, I have to say how wonderful my husband has been through all of this.  He has shown the most wonderful compassion.  He cares for me.  He acknowledges that when I have a headache, it's not always just a headache.  That there can be something more serious going on.  He remembers everything about my illness.  He worries.  He appreciates the effect of my illness.  I am grateful for him and my children.

It's a beautiful autumn day.  The trees are blowing with the morning autumn wind.  Leaves are falling.  This has me remembering a time past.

On days such as today I used to rush to get dressed and go outside with my broom and rake in hand.  My obsessive personality would force me to clean up every leaf that fell.  I would take strange pleasure in seeing a clean sidewalk and lawn.  Happy to view the large black bags filled with the fallen autumn leaves.

Fast forward to this morning.  I can no longer go outside and snatch up every fallen leaf.  I no longer want to.  I am taking great pleasure from seeing all the leaves on the ground.  This is what autumn is all about.  No need for me to rush out and clean everything up.

I believe I have changed.  And, I am sure that this change is for the best of me.  Things are the way they should be.  My life and the leaves are right where they are supposed to be.

Just as I can't change the leaves falling to the ground.  I was never able to get every last one anyway.  I cannot change the path that my life has taken.  Things are different.  Things change.  I now know that I can live with these changes.  I am still ill, but being ill doesn't have to have me.  I will go along with the flow of things the best way I can.

I can rejuvenate my spoons by learning how to use them.  The first and most important way to do this is to learn to accept and not stress.  Life is good.  I am learning to be thankful for what I have rather than grieving over what has been lost. 

The Sunday Seven from Charley

THIS WEEK'S QUESTION:
Of the movies in your current DVD or VHS collection, name seven (in no particular order) that you have watched enough times to make your friends suspect that there might be something wrong with you but that you can't imagine not watching again.

I got this from Dawn's journal Carpe Diem - Seize the Day

1.  The American President

2.  My Cousin Vinny

3.  Pretty Woman

4.  Moonstruck

5.  Uptown Girls

6.  Steel Magnolias

7.  Something to Talk About

Okay, I admit it, I am hooked on Julia Roberts' movies.

 

I can smile

I have realized that I am the only one that can change the way I look at my new life.   It's very odd because when I was healthy and worked like crazy all I wanted was free time.  My life was fast.  Everything was done quickly.  I had no time for ME.  I worked.  I came home and did everything around here.  I slept and woke up and played the day again.

   

Now I have all this time on my hands and was feeling bad for myself.  I made excuses for these feelings.  I believed that I was allowed to wallow.  But, in my wallowing I lost a huge part of me.  Yes, things are different now.  My energy level is minimal.  I hurt constantly.  That still is no excuse to think the way I was thinking.  My life is changed but that doesn't necessarily mean it has to be over.  There is still life in me.  I have to start to concentrate on me.  My children are pretty much self sufficient.  Everyone has their own things to do.  I will find mine.

                 

Maybe I will write.  Maybe craft.  Whatever.  I cannot defeat this demon Lupus but I can control how it makes me feel.  I can smile. 

      

Tagging

1)   Go into your journal archives.
2)   Find your 23rd posting.
3)   Go to the 5th sentence of that post.
4)   Re-post the text of that sentence, with a little explanation.
5)    Tag 5 other people to do the same.

I am inept and ill chosen in spirit to handle this weighty thing that has been pressed upon me. 

This is from my journal entry of  Sunday, February 27, 2005.  It was one of those times when  I was feeling overwhelmed by my illness.  These days (weeks) come and go.  There are times that I am up and times that I am down.  This is the life of a Lupie.

Let's see who I can tag?  How about.....

Karyl

Christina

Jazz

Jackie

and Loretta Life with Lupus

Have some fun.  It's pretty interesting to go back and read some of your past journal entries.

MY NAME

Could someone tell me how to make sure that my name doesn't come up as a spelling error? 

I am pretty positive that I am spelling my name correctly.  Although lately, my mind has been empty.

Do you know what it's like to be alone all day?  I'm so lonely.  No one to talk to. I used to be the type of person who had loads of friends.  I was the one who would talk to everyone and anyone.  I did have two very good friends.  But, unfortunantely, as I grew sicker my friends grew more distant.  It's a common thing for people to disappear from your life when you are going through an illness.  Especially when you have a chronic illness.  I changed.  My illness changed me.  My emotions are changed.  My entire life is changed.  I no longer can do the things I once did.

I am very lucky to have a loving family.  A husband who cares for me without thought for himself.  He has proven time and time again that his love for me is forever.  For this I am grateful.  I am proud to be his wife.  My children are loving and I am proud of them.  But, they go about their business.  And, well they should.  I would not expect anything else.  I am not one of those mother's who want their lives to stop because mine is different.

It has just be hard for me to find my nitch.  A new nitch.  I am not complaining.  I am just thinking how much different things have become.

I'm tired of being tired. 

COMMON MISCONCEPTIONS

I  have been reading http://www.geocities.com/issymissy/facts.html This is a site that I read often, but today I found this information there.  Check out the site, it's full of great Lupus information.   COMMON MISCONCEPTIONS FROM http://www.geocities.com/issymissy/facts5.html

Rheumatology, the branch of Internal Medicine specializing in the treatment of such autoimmune diseases as SLE, is a relative new-comer, having only been established in 1972. Though much knowledge has been acquired and many advancements made since that time, the vast majority of our nation's physicians not trained in Rheumatology are not up-to-date on the lastest research findings concerning Systemic Lupus. As a result, most of our health care professionals are ill-informed, creating tragic mis-diagnosis for many lupus sufferers.

Unfortunately, many physicians erroneously believe a lupus patient MUST have the "Butterfly Rash", that Photosensitivity EXCLUSIVELY produces a skin rash, and most look ONLY for LE cells, anti-native DNA, and anti-sm antibodies ~~ completely ignoring a false-positive shyphilis result. The most commonly over-looked lab test is that for the anti-cardiolipin antibody. Patients with the Lupus Anticoagulant Syndrome commonly show normal or near-normal lab results in all other respects, and usually present with symptoms different from those most widely associated with the disease. Due to this phenomenon, until an indivdual is specifically tested for the Anticoagulant Syndrome, a lupus diagnosis remians elusive.

In addition, many physicians are unaware that normal or near-normal lab results CANNOT eliminate a lupus diagnosis in a patient with reports of extensive systemic complaints. Even fewer physicians realize that fluctuating laboratory results in a lupus patient are not necessarily in direct proportion to disease activity. It is possible for a patient with the Anticoagulant Syndrome to suffer a stroke, (or TIA) while Sedimentation Rate, blood compliments, spinal fluid, and anti-DNA may all be normal. Individuals with SLE will, from time to time throughout the course of their disease, have ANA (Anti-Nuclear Antibodies) results ranging from very low titers to high titers, and can even have negative results in the height of illness. However, perfectly healthy individuals can have a positive ANA, so this alone cannot establish a lupus diagnosis. Because of inadequate education in SLE, many physicians will not even think to test a patient for lupus -- especially a man or child -- while others are too quick to give a lupus diagnosis without adequate findings. It is believed by some Rheumatologists that many patients who have been diagnosed with Systemic Lupus actually have Fibromyalgia (FM) instead. While FM can be quite functionally-disabling, and it shares many symptoms with SLE, FM does not cause organ damage and it is not life-threatening.

While low platelet and white cell counts are listed among the diagnostic criteria, many physicians are unaware that elevated platelet and white cell counts can be indicative of "Vasculitis" ~~ a secondary condition which is quite common in SLE. In fact, a great majority of lupus symptoms can be traced to this vascular conditon, especially in those patients with the Anticoagulant Syndrome.

Another mis-conception is that lupus patients who suffer Central Nervous System (CNS) involvement will always show the presense of anti-native DNA antibodies. While this antibody certainly leads to a definite CNS diagnosis, there remain a great many lupus patients without this antibody who display CNS involvement. It has recently been discovered that cognitive dysfunctions can also be traced to to low-levels of oxygen in the blood, especially in those in who experience such vascular disorders as migraine headaches, Raynaud's Phenomenon, and the Anticoagulant Syndrome. This is thought to be a result of restricted blood flow to the brain due to inflammation of blood vessels. While 50% of lupus patients have the anti-DNA antibody, as many as 75% report cognitive impairments.

I read in Christina's Journal this morning about the word adapt.  Please check it out.  This has been going through my mind a lot lately.  Learning how to adapt.  How things are different now.  How other's think giving me "Loving Advice" helps.  Christina has hit the nail on the head.  Thank you Christina.

7 Things I plan to do before I die:
 
1.  Have my own home.
2.  Have a real honeymoon.
3.  Renew my wedding vows.
4.  Move to South Carolina.
5.  Watch my children marry and have children.
6.  Retire with my hubby within the next 10 years.
7.  Travel around the country a bit (Val, I stole this one.)
 
7 Things I can do:
 
1.  Have faith.
2.  Be a good mother (Another one stolen from Val.)
3.  Bake
4.  Smile
5.  Write
6.  Give advice and support to those I love.
7.  Love
 
7 Things I can't do:
 
1.  Deal with liars
2.  Understand hate.
3.  Have too much energy (Another one from Val).
4.  Get confused, it makes me disoriented.
5.  Do housework anymore.
6.  Fix anything.
7.  Sleep

7 Things that attract me to the opposite sex:

1.  Compassion
2.  Understand my humor
3 Humanity
4.  Morals
5.  Eyes
6.  Smile
7.  Strong hands

7 Things I say most often:

1.  Okaaaaaaaaay
2.  I’m hurting
3.  I’m tired
4.  I can't remember.
5.  What?
6.  Huh?
7.  I don’t understand

7 Celebrity Crushes:  Sorry I don’t have any.

7 People I want to do this:

Loretta

Karyl

Christina

Jazz

Linda

Jackie

Beckie's Bright Beginnings

Tracey

Remembering the victims of September 11th

Following in Krissy's footsteps and remembering 911, I am dedicating my journal entry today to remembering that tragic day in 2001.  The day the world stood still.  I am both sad and honored.  Sad for the thousands who perished that day.  Honored to be an American.

While the storm clouds gather far across the sea,
Let us swear allegiance to a land that's free,
Let us all be grateful for a land so fair,
As we raise our voices in a solemn prayer:

God Bless America.
Land that I love
Stand beside her, and guide her
Thru the night with a light from above.
From the mountains, to the prairies ,
To the oceans, white with foam
God bless America
My home sweet home. 

God Bless America,
Land that I love
Stand beside her,
And guide her,
Through the night
With the light from above,
From the mountains,
To the prairies,
To the ocean,
White with foam,
God bless America,
My home sweet home.
God bless America,
My home sweet home.

 

MY HEARING

Good Morning My Friends!  I'm sitting here with a horrid headache.  I've had it since my hearing on Thursday.  I suppose that the stress is getting to me.

I couldn't tell how my hearing went.  The judge didn't have any recognizable facial expressions.  Although, he did ask many questions.  Which, I answered honestly.  He was very impressed with my list of medications.  Commenting on how strong some of them were.  I ended up crying when he asked me about the circumstances that lead up to my suicide attempt.  All I could get out was that things were changed.  My life is changed.

My attorney had Gary testifiy as to what my daily life is about.  Gary told him about my confusion and inability to do the things I did before.  How I get lost.  My husband ended up sobbing through the testimony.  This touched my heart.  I always knew that Gary understood my illness and has been here for me.  But seeing him sob broke my heart.

My attorney was great.  He said some very strong stuff.  He told us that even though he cannot say for sure how it went, he is confident it went well.

I will know in a few weeks what the outcome is.  I believe the decision will be favorable.  Please continue to pray for me.  Thank you so very much.

"For nothing is impossible with God."  Luke 1:37

Work hard so God can approve you. Be a good worker, one who does not need to be ashamed and who correctly explains the word of truth. 2 Timothy 2:15

I received these two scriptures today via email.  I get emails daily like this.  I thought these two were so appropriate for me today.  I am confident that all will go well at my SS Hearing today.

SS Hearing

I have my Social Security Disability Hearing tomorrow at 10:00 am.  I would appreciate all the prayers you guys can give me.

Thank you so much.  I will post tomorrow night as to how the hearing went.

Love you,

Lu

AS WE GROW UP

As we grow up, we learn that even the one person that wasn't supposed to ever let you down probably will. You will have your heart broken probably more than once and it's harder every time. You'll break hearts too, so remember how it felt when yours was broken. You'll fight with your best friend. You'll blame a new love for things an old one did. You'll cry because time is passing too fast, and you'll eventually lose someone you love. So take too many pictures, laugh too much, and love like you've never been hurt because every sixty seconds you spend upset is a minute of happiness you'll never get back.

Good Morning.  Another night of pain and sleeplessness.  I feel as if I am in a "Catch 22" situation.  Because the pain I have been experiencing this weekend can or cannot be attributed to my pain medication.  I know that sounds strange but it's true.  I had to resort to my "Big Gun" meds this weekend.  The pain in my back was becoming too intense for regular NAISD's.  But, I was unsure if the pain I have been experiencing was my back, kidneys or diverticulitis.  You see, it started to radiate to my groin on the left side.  So it's hard to distinguish what pain is from what.

I take the pain meds with codene and it causes me to become constipated.  Therefore, the pain I am experiencing can be from all three ailments.  How wonderful is that?  This is the way I live.  The med I take for pain causes a problem.  The side effects of my meds cause other health issues.  Again, how wonderful is that?  Nope, it's quite horrible.

I feel as if my insides are ripping out.  The pain is now concentrated in my left lower abdominal/groin area. I believe I passed a few kidney stones this weekend, as well.  Believe me I know what that feels like.

It seems to be a common problem for Lupies.  The kidney stone thing.  As many of those I have spoken too experience the same symptoms.

So what do I do?  Someone please let me know.  I am asking for suggestions from you guys as to how you manage pain.  I have been putting off seeing a pain management specialist for a few reasons.  The main one being my finances.  I just cannot afford the copays for the visits and the medications.  But, I guess I need to make an appointment soon.

It's been a long weekend.  Gary and I have been watching the News coverage of the effects of Katrina.  Watching this makes everything else seem petty in comparison.  How I am feeling?  Whatever I feel, it all pales to what is going on in the Gulf States.  I have found myself wondering about those people who feel as sick as I do but live there.  Without any resources.  Without the necessary, basic tools for living.  I cannot imagine. 

I sit here in my comfortable house complaining that I am warm.  How selfilsh of me.  I am able to rest because my husband is taking over today because I'm feeling like crap.  I was able to get into the shower to clean myself.  How can all of this devastation be fixed?

The news commentator said that they are expecting the death toll to be in the thousands.  I look at the coverage and imagine that it's like a third world country.  But, it's not.  It's in America. 

People are saying that our government waited too long to send help.  People are saying it's because those there are poor and black.  I'm sad to think "What if this is true?"  I cannot comprehend this reasoning.  We are one nation.  We should be sticking together.  But there are always those who will complain no matter what is going on.  The Constitution allows this.  It's a right we have to express our opinions openly without fear of reprisal.  This is what makes me realize when I look at the pictures on the news that it is not a third world country.  It is America.

I keep praying for these victims.  I keep them in my thoughts constantly.  I keep saying...... But there for the Grace of God, Go I.  My prayer is that the victims continue to have HOPE.  Not to lose FAITH.  I will continue to pray for them, for our country and for a exhibition of FAITH in God, like we have never seen before.

My Story

As I prepare for my hearing next week, I decided to write down how I came to this place. 

 

 

Out of nowhere, I came down with a feeling that I had a horrible flu or some virus that wouldn't leave my body.  It really threw me for a loop.  My energy level was so very low.  I was always so active. Never sitting still.  I worked hard and was able to take care of my family.  In the very beginning I was upset because no one could not find out what was going on in my body. My friends and family did not understand what I was feeling. It pissed me off because the answers I received from the “so called” specialists was that I was tired because I had little children.  Or I was feeling stressed and depressed. Then one day my doctor called me up and told me that my blood tests revealed that I had antibodies to Mono.  But the weird thing was that none of my tests showed I had mono. He poo pooed it.  I think because he could not find any way to help me.  These symptoms persisted for years. I was sure that I had some sort of autoimmune thing going on. As my grandfather and all of his siblings had some sort of autoimmune disorder

 

Finally, some Rheumatologist told me I had Fibromylagia.  That was in 1990.  Who knew what Fibro was?  I just figured he was patronizing me.  I found myself dwelling over my symptoms, crippling my body mind and soul. I could not move on.... and the Doctors could not give me what I so badly needed; recognition that I was indeed sick and a Diagnosis. This lasted for years.  I sort out different doctors.  Then I met a doctor who took me seriously.  She took one look at me and said, “First we have to get you to sleep!”  She put me on ambien and elavil.  Within weeks I started to feel like a human being.  I started having some energy and the pain was not so bad. 

 

But within a year I was feeling like crap again.  The fatigue and pain returned with a vengeance.  But that was not all, this time I was experiencing very strange numbing and tingling sensations on the left sideof my body. Along with these episodes I would have a hard time speaking.  I felt like I was having out of body experiences.  Because I would know what was going on, but I could not communicate.  It was very scary.  I told her of my symptoms and she took another look.  This time she looked at my skin.  She pointed out a blotchy appearance on the skin of my arms and legs.  She called it “livedo reticulavis.”  Which was evidence of an autoimmune clotting disorder called antiphisiploid syndrome.  More blood tests were ordered.  This time my tests showed that I had two antibodies.  The Lupus Anticoagulant and Antiphisiploid antibodies.  These blood tests were repeated two or three times.  I was put on a baby aspirin to try to control what my doctor called TIA’s or mini strokes.  The aspirin did nothing, so she put me on Plavix.  This also did nothing so I was put on a combination of baby aspirin and Plavix.

 

Then one day I had a stroke.  I was at work at the time.  I started feeling not right on my way to work. But, I continued on my way.  In the elevator I started to feel shaky and broke out in a sweat.  The nurse on duty at the nurse’s station took my pressure, it was 210/120.  I was immediately given oxygen and put into a bed.  911 was called.  I was in the hospital for about a week and put on coumadin.  I only stayed out of work for two weeks and despite my physician’s advice I returned to work.  Two weeks after that I had another stroke.  I was forced to stay out of work on short-term disability.  I was having seizures and horrid headaches.  Plus the excruciating pain and paralyzing fatigue.  My body was a mess.  I could not move without screaming in pain.  I managed to attempt to go back to work six months after my second stroke.  But it was an arduous task.  My mind was not the same as it was before I got sick.  I couldn’t remember little things.  I was no longer able to multitask.  The stress of my job made me sick. 

 

Then in February after I returned to work, I started to experience chest pains.  I was once again admitted to the hospital.  Where I learned it was angina.  But I was determined to try to work.  I lasted until March of that year.  It was just too much for my body to take.  Then at work I was packing a box and hurt myself.  That injury threw my body into one of the worst autoimmune flares I have ever had.  I am still not right. My pain is horrific at times and there really isn’t anything that can be done about it.  The fatigue I feel is terrible.  Some days I just lay in bed because it takes too much of my energy to get out.  I get episodes of confusion and disorientation.  I do not go out alone because I have gotten lost.  One time I was in the supermarket and just walked around there for over anhour.  I forgot where I was and what I was doing.  That episode started my depression.  It was just too overwhelming for me to accept that I was not the person I once was.  By the end of 2004 I was so disoriented and upset that I attempted to take my own life.  I was admitted to the psych ward for six days over the New Year Holiday.
My symptoms are here to stay. My body trembles, especially my shoulders and arms  I am in pain and very weak.  I feel very inapt because I am no longer able to use fine motor skills, that at times could be quite severe make it difficult for me to work.  Going outside on a sunny day means that I need a big hat, tons of sunscreen and still that does not stop my body from experiencing the effects of photosensitivity.  Even indoor fluorescent lights hurt me.  The mouth and nasal sores, the little sores on my face and scalp is a direct result of my illness. A fatigue that seizes my life and sometimes will go away for days or weeks. Of course the joint and muscle pain and stiffness are unyielding. My list of other disturbances that continue to plague my body is incommodious and devastating. I have CNS and GI involvement.  I suffer from diarrhea, abdominal cramping. I am forever getting bouts of contocondritis.  Plus I have been in the hospital 9 times already this year because of my illness.  I have been in the hospital for a load of different things, but all ending up to be because of my illness.  There the only thing that handles my pain is heavy duty narcotic meds. At home I take high doses of narcotics as well.  I call them my "Big Gun" meds.  Taking them makes me feel groggy and drugged. But, it's the only thing that takes some of my pain away.  My coumadin levels have been so erratic that I have had to be admitted to the hospital and put on heparin and given Vitamin K.  I also have seizures and they come 3 or 4 times a week despite being on medication. 

 

It seems that every time I turn around some other horrible symptom appears.  I have already been in the hospital 9 times this year.  Nothing turns out to be “normal” for me.  I can’t have a simple procedure without being subjected to days or weeks of preparation.  My coumadin levels have to be just right.  Because even a simple tooth extraction can lead to a hospital admission.  Then afterwards again I face weeks of trying to get my coumadin levels therapeutic again

 

The worst thing for me I think is the loss of who I once was.  My life should be easy now.  I had a career that I loved and excelled at.  My children are older now.  This should be the time that my husband and I should be enjoying ourselves.  But no, I spend my time visiting doctors, going into the hospital.  Trying to relieve my pain.  I sleep so much.  My body experiences so much.  I try to see past this, but so often it is very difficult.  Believe me I am not complaining, this (as Loretta put it) is just a list of the facts of my life.  But, I do believe that sometimes I am allowed to throw my own pity party.  Whether or not anyone likes it or not.  No one is in my body.  No one knows how I feel.  Everyone has a miracle cure for me.  “You take too many medications!”  “You just need to get out in the sunshine!”  Yeah, like that will help.  I’m not happy about all the medications I take, but believe me that I know going off of them will be dreadful.  If I think I am sick now, watch what happens when I stop taking my meds.