Saturday, April 30, 2005


The lonely one offers his hand too quickly to whomever he encounters.
Friedrich Nietzsche (1844 - 1900) German philosopher, poet

Lonely  ~~  being without company ~~ cut off from others : SOLITARY

I'm lonely.  I've realized this for some time now.  Oh I have loads of loved ones who care about me.  But I am still very lonely.  It's amazing how you can be in a room filled with people and still be lonely.

We have a real need to be connected to other people. We have a real need to love and be loved, to value and to be valued. When there is not enough of that sort of connection in our lives, we feel lonely.

We were designed to have an interest and concern for others. But we can't just force ourselves to change. Other people may tell us exactly what we need to do, but it isn't that simple.

To read more check out the following website.....

Loneliness raises levels of circulating stress hormones and levels of blood pressure. It undermines regulation of the circulatory system so that the heart muscle works harder and the blood vessels are subject to damage by blood flow turbulence.

Loneliness destroys the quality and efficiency of sleep, so that it is less restorative, both physically and psychologically. They wake up more at night and spend less time in bed actually sleeping than do the nonlonely.

To read more check out the following website.....

I'm trying to understand how to overcome this feeing.  I suspect that there are many reasons that I am feeling like this.  Circumstances in my life.  How I view those circumstances.  Things such as that.  It's not a feeling that is easily put away.  I nurture those I love and care about. I am a talker by nature.  I just don't have it in me to do that lately.  I remember being outgoing and vivacious.  Trusting and secure with my relationships.  I have become a solitary individual.  I can't even open up anymore.  It's baffling when you don't grasp the circumstances.  When you cannot comprehend your transgression.  It's amazng how lonely you can make yourself when you don't trust.  Please pray for me.  Pray that the Lord sends me his strength to remove this saddness from my heart.

Sunday, April 24, 2005


Living with chronic pain is no picnic.  Can you imagine just waking up every morning in pain?  Better yet imagine having this pain with a diagnosis that it not yet understood by the general population."





Lupus  is a chronic disease that can cause inflammation, pain, and tissue damage throughout the body. Lupus is an autoimmune disease, in which a person's immune system attacks its own tissues as though they were foreign substances. If you develop serious lupus, you may have problems with your kidneys, heart, lungs, or blood cells.

Although some people with lupus have mild symptoms, the disease can become severe. For most people, ongoing monitoring and treatment can control symptoms and prevent serious organ damage. 


Fibromyalgia (FM) is an increasingly recognized chronic pain illness, which is characterized by widespread musculoskeletal aches, pain and stiffness, soft tissue tenderness, general fatigue and sleep disturbances. The most common sites of pain include the neck, back, shoulders, pelvic girdle and hands, but any body part can be involved. Fibromyalgia patients experience a range of symptoms of varying intensities that wax and wane over time.

Miss Kitty Fibromyalgia Center

Antiphospholipid Syndrome is a disorder in which the blood clotting system begins to form blood clots in the veins or arteries without obvious reason. The symptoms of Antiphospholipid Syndrome include blood clots (thromboses) in leg or arm veins and/or arteries; blood clots which travel to the lungs (pulmonary emboli); sudden loss of vision; occasional episodes of numbness, tingling, or weakness in the face or limbs; stroke; seizures; and recurrent miscarriages. All of these symptoms are the result of blood clots occurring in small to medium sized blood vessels. Most people affected with this disorder have only one or two of any of these symptoms. They are however at risk for developing additional symptoms if not treated appropriately or monitored by a physician knowledgeable about the disorder. 

Antiphisiploid Syndrome

I had an opportunity last evening to have to go to the ER because I was experiencing horrendous chest pain.  Or what I thought was chest pain.  What I was having was the most excruciating and unbearable pain I have ever experienced in my entire life.  I actually thought I was having a heart attack.  Visions of all sorts of cardiac procedures were storming through my head.

I had to wake Gary up.  He called the paramedics who quickly arrived.  Actually 3 ambulances came.  They took my blood pressure which ws 170 over 100.  But they did a field cardiogram and a heart attack was ruled out.  I was taken to the hospital anyway because of the extent of my pain and my elevated pressure.

At the hospital I was quickly assessed.  Blood drawn.  I was given a shot of morphine 8 IV push.  XRays were taken an abdominal CAT Scan done.  Aside from the normal funky blood work, nothing showed.

That's when I was given the "LOOK." Some of you know that look.  It's that look you get from the doctor or the nurse.  I was finally told that I could not get anymore narcotic pain meds even though they suspected that my pain was from Costochondritis.

The thing is I was riling in pain still.  I can't take anti inflammatories for many reasons.  Two being I am on coumain and I have multiple GI problems.  but they still wanted to keep me overnight for observation. I asked if that was necessary.  I was told that it was my decision.  Considering I was the one in pain.  I was blunt and frank.  Telling them that I had more access to pain meds at home then I did there.  I felt no reason to stay.  The attending had already put a call into my primary.  I told them that I believed that he would agree with me and that they should ge my discharge papers ready.  And secondly, if they were to keepme the only thing they would be doing would be to screw up my INR leels anyway. History had proven that.

Pain Can Be Tamed

(Article From Time/Life Magazine)

Although an estimated 50 million americans suffer from chronic pain, only 26% of those battling moderate to severe pain are referred to the proper specialists. This doesn't mean other doctors can't treat pain effectively, but the complexity of diagnosing the condition and designing a treatment for a specific patient, especially prescribing possibly addictive narcotic-based painkillers, can make this a difficult and tedious task if a physician isn't well versed in pain management.

Chronic pain is generally defined as persistent pain, like daily migraines, or pain that continues after an injury heals or fails to heal. Everyday aches and pains don't count. "A patient's complaint of 'Oh, doctor, my aching back!' isn't enough to just pull out the prescription pad and write for conventional narcotic meds," says Dr. Russell Portenoy of New York City's Beth Israel Medical Center, president of the American Pain Society, a professional group. Instead, he urges a comprehensive assessment of the pain's characteristics, including its causes and impact on the patient's activity and quality of life. Such an analysis should be performed immediately. Treating Chronic Pain Seriously

We wonder why doctors are leary about prescribing us effective pain meds.  Do they worry that we will become addicted? 

"Pain patients, by contrast, couldn't be more different. Being on an opioid allows them to interact with their families, to get out of hospitals, and to go back to work. Indeed, their efforts to maintain their health are in marked contradiction to the utter disregard addicts show for their health. If we wish to equate addicts with pain patients, the more appropriate comparison is with the under treated pain patient."

 Here is a great site that explains this....Addiction VS Dependance

Anyway, all I am trying to say is that I just want to feel better once in a while.  I don't like to be looked at like a drug addict or a drug seeker.  I remember those days when I could get out of bed and do 2 or 3 loads of laundry, straighten out the house, get the kids ready and get myself ready all before I had to get to work.  Then go to work do my job come home and make dinner.  And, still have the energy and not be in any pain.  I felt like a million dollar.  Now it takes all of my energy just to get in the shower and I have to rest afterwards.  My body hurts.  Imagine my goods days are like having the flu all the time.  Can you imagine what my bad days are like.


Saturday, April 16, 2005


Last night we had the sad task of putting our beloved dog Ginger to sleep.  She was very ill.  Ginger was our puppy dog for 14 years.  We got her when she was just about 6 months old.  We are all so very sad.  There are no words to describe the anguish we are going through now.  But, we do know that it was the right thing to do.  Ginny (as we called her) was suffering so.  It had gotten to the point that she could no longer climb the stairs and she was covered with tumors.  But what had been the deciding factor to put her down was that she could no longer hold her urine and that she had started to have a problem with holding her bowel movements as well.  Ginny, as the Vet told us, probably had cancer. 

She was loved so.  And, will be missed terribly.  But she had a good life.  Rest in peace my dear Ginny.





Sunday, April 3, 2005


Oh Dear Lord I feel visciously horrible lately.  And, it's just getting worse.  Will my doctor ever find a medication that will truly help me?  I can't believe this......... Eight people in like 250,000 or some ridiculous ratio like that and I have to be one of those eight people whose liver can not metabolize Imuran.  My doctor is hopeful that my liver function tests will return to normal.  But I am quite pissed off.  Even though Imuran and prednisione didn't appear to be working, it must have been because now I am hurting big time.  Those meds were really doing a good job of keeping my flares at bay.  What am I supposed to do stop all of my medicine now?  Most of my meds I have found out are metabolized through my liver.  Geez, this is not making me happy.  This is not a good thing.

Friday, April 1, 2005


I was so happy to receive these lovely comments today.  Thank you so much.



love and wordless again.
just love
Comment from ceschorr - 4/1/05 6:13 PM


Sara, with all you are going through you still had time to read my journal.  You are such a Sweetheart.  I love you bunches


Hey, Lu,
I am sorry that the pain is so bad.
Are you getting a lot of weather changes right now?
That always seems to make the joint pain worse.
Is it possible for you to ask your doctor about a pain patch instead of the oral dosage? I am not 100% sure about this, but somewhere I think I heard that using a patch can bypass some of the liver wear and tear.
Just a thought.
Hoping you are feeling more comfortable.
With Love,
Comment from lrttklly - 4/1/05 2:13 PM



I never thought about asking for a pain patch.  I will at my next rheumi appointment.  Thank you for all your support.  Love you bunches.... Lu


Sending hugs for you to feel better. Hope your test comes back ok. So hard though that the medicine to help you feel better causes other things to be worse. Happy April Fool's Day to you! Linda

Comment from fasttrack58 - 4/1/05 11:55 AM



It is so nice when people understand what I am going through.  Hugs and kisses..... Lu


Lu dear I hate that you are having such a rough time.  I am sending hugs and prayers and
loving you
Comment from klconard1 - 4/1/05 11:37 AM



I always appreciate your hugs and prayers.  Sending them right back to you too.  Love you so much Lu


I am so sorry that you are having to live with this pain.

I said a prayer for you.

You are a brave person and I appreciate your writing about Lupus.

I am understanding it better through your eyes.

Stay calm and continue to be brave just not so brave that you hurt when the meds might help.

Your in a ugly place with the liver causing problems.
Thinking of you this day!

Mary Louise
Comment from mlrhjeh - 4/1/05 10:48 AM


Mary Louise,

<P class='MsoNormalstyle="MARGIN:' 0pt? 0in>You have shown me strength many times.  It makes me feel honored for you to call me brave.  Thank you so much.  Loving you Lu



I received this today from Glena in an email today and wanted to share it.......  



When I stand up for myself and my beliefs, they call me a bitch.  


When I stand up for those I love, they call me a bitch.    

 When I speak my mind, think my own thoughts or do things my own way, they call me a bitch.  


 Being a bitch means I won't compromise what's in my heart. It means I live my life MY way. It means I won't allow anyone to step on me.


When I refuse to tolerate injustice and speak against it, I am defined as a bitch.


 The same thing happens when I take time for myself instead of being everyone's maid, or when I act a little selfish.    

It means I have the courage and strength to allow myself to be who I truly am and won't become anyone else's idea of what they think I "should" be.


I am outspoken, opinionated and determined. I want what I want and there is nothing wrong with that!


So try to stomp on me, try to douse my inner flame, try to squash every ounce of beauty I hold within me. You won't succeed.  


And if that makes me a bitch, so be it. I embrace the title and am proud to bear it.

  B - Babe

I - In

T - Total 

C - Control of

H - Herself                                     

B = Beautiful

I = Intelligent

T = Talented

C = Charming

H = Hell of a Woman                            

  B = Beautiful

I = Individual

T = That

C = Can

H = Handle anything