Wednesday, June 28, 2006


I've been feeling very alone lately.  There is not much for me to do here.  The days just seem to melt into one another.  I don't feel depressed.  I just wish I was able to do more during the day.  That I had something to do.

Everyone here has some purpose.  Me, I can't seem to keep my eyes open past 7.

Wednesday, June 21, 2006

Good Morning

Lately I have been sleeping horribly. 

I have no trouble falling asleep.

Staying asleep is the problem.

This morning I was up at around 4ish.  I was very happy to see that NYPD Blue was on TNT.  So I got my meds ready and watched it.

I would love to get out today but I have no car.  Gary, Jr.'s car is in the shop so he must take mine to get to work.  That is more important than me going shopping and spending money.  Don't you think?  Especially considering the car repair will cost $790.00.  Working breaks and exhaust system are important.

Wilson, our new puppy, is doing well.  He has already gained 4 pounds (it must be more by now).  He still cannot go out for a walk where other dogs might be.  He is too young for his rabies shot.  Wilson has been sleeping in bed with us.  It works out well when I finally get back to sleep and want to sleep late.  He just lays there and waits for me to get up.  He is a good boy.  Except that he likes to nip at me.  I think he is teething.  We bought him a lot of toys so when he starts nipping we just give him one of his chew toys.  I'd include pictures except that I forgot the code to enter to add a picture in my journal and when I try to add a picture above my computer freezes.  Gotta have Gary, Jr. look at it.  Hey I just remembered the code, I think.

Tomorrow I have a rheumi appointment.  I am going to take the NYC Access A Ride there.  He wants to follow up with me since I was in the ER last week.  I am flaring and my electrolytes were very low.  The fentanyl patch seems to be working.  But fatigue has been a major problem.  Plus my skin is very itchy.

I'm  doing somewhat better emotionally.  Thank you so much for your comments and emails encouraging me.  As my mood above says, I am still feeling frustrated.  I guess that's okay.  It will pass.

Please pray forLoretta's Life with Lupus sister and mother.  Read her journal.  Also Karyl, Kathy and all of my Lupie friends.  They all have woes other than Lupus going on.

Thank God our central air conditioning is fixed.  Thank God that hubby is talented and can fix stuff.  The heat was really giving me a hard time.  I was being a real horror too.  Just couldn't take the heat. The temp in the house read over 90 degrees.

Have a wonderful day!

Saturday, June 17, 2006

I'm Back

I’ve been MIA.  Not only from writing in my journal, but from my life


Lupus is a torturous illness.


Lupus doesn’t allow you to live your life.  In my mind I make plans to do stuff but my body does not allow me to put those plans into actions.


Living with Lupus has changed my entire life.  There is a saying………”I have Lupus, but Lupus doesn’t have me!”  I’ve been trying to live by that quote.


It’s amazing how your life can change.  One day you are working.  You’re body is fit.  You go and do.  Then one day things are entirely different.


There are so many things I want to do.


Work in my garden.


Cook real meals for my family.


But, most importantly, be able to get up in the morning and hop out of bed, get into the shower and go about my day. 


I can’t do those things.


So for the past few months I have been feeling sorry for myself.  It’s the summer.  A time when I would be doing stuff.  I don’t wallow.  But, I am worn out.


My pain has been under control for the past day or so.  This is only because I gave in and went to see a pain management specialist.  Dr. P. prescribed a fentanyl patch.  So far so good.


Although, my exhaustion is running rampid.  I am determined to fight this.


I’ve made concessions. 


Instead of planting and tending to my backyard garden, I’ve been container gardening. 


I’ve been cooking meals in a crock pot or the convention oven.


I take my shower before I go to bed in the evening.  Even though I prefer that freshly showered feeling in the am, it’s just not an option.


I hired someone to come in and clean the house.


I delegate chores now.


I order dinner more often.


I buy ready made food.


These were things that I never did.


I have made other concessions too.  I give in to the fatigue and nap when I need to.  I pace myself when doing stuff.


I’m tired of being sick and tired.  I’m hating Lupus.  But this is what my life is like now.


I have to make the best of what I have been given.


Loretta, after writing in her journal about how she felt and what it was like to live with lupus, said that she wasn’t complaining…….simply stating the facts.


I was never one to complain.  Though I do now.  I don’t like this new personality trait.