Lupus journal


Today is a huge day for our business.  WE purchased this business back in January, and it has been a roller coaster ride to say the least.  It seems we take one step forward in this process then we sail smoothly for a bit and wham, a dam breaks and we are trying to sift through some more rubble left here by the previous owners.  But, today…today we begin training on our new piece of equipment.  It was really a miracle that we were able to purchase it the way we did.  Being so new in business left us with not a lot of buying power when it came to financing.  But because the owner of the company who sells this particular type of machine believes in us, has seen where we have taken this company in just 6 short months, he financed the purchase himself!  What a miracle.  But a long with that miracle comes the stress of having to be trained, and having to keep the business running smoothly during the training process. 

WE are a small shop, only three employees right now.  So, when we have work to do we are are busting our humps to get it done.  And while I am here everyday to help out, there are days, like today, where I feel almost useless.  I can feel that there is something working it’s nastiness in my body.  It’s strange how, when you have a disease like Lupus you can actually hear what your body says.  You become so much more closely in tune with what every ounce of your being tells you, from physical, mental, emotional, even my taste buds become different when I feel something isn’t right. 

It began yesterday.  I started having those twinges in my lower back.  They aren’t foreign pains to me.  They are very vocal, like my back is screaming at me to stop whatever I am doing and listen.  There are twinges that mean “lori you need to slow down.  Us joints and muscles just need a slight vacation.”  And there are the twinges like yesterday that say “Lori, pretty soon it is going to hurt like crazy when you urinate.  Your lower back is going to burn like a million fiery needles are being pushed through it.  You are going to have the chills whether it is 115 outside or not.  And YOU WILL be the recipient of a bladder infection.  Congratulations.  It couldn’t happen to a nicer person!”  I’ve gotta say that sometimes when my back talks to me it gets a bit sarcastic!  (yes I am a bit of a odd duck when it comes to how my body talks to me!  But humor is about the best medicine I’ve got!)

So, today the guys fly in from Colorado to begin the training process, I have a 100 degree temp, my back is killing me and all I want to do is sleep.  But for me, today, that isn’t a possibility.  I have a job to do to make this business work.  This is our lifeline, our income, our retirement and our livelihood.  If this business doesn’t fly we are dead in the water.  Am I being too wordy?? Maybe I’m being too wordy.  OH well, that’s who I am I guess.  Anyway, I really am not in a position to work.  I am on disability and have been for a few years.  So, my work here with my husband is basically the stuff he doesn’t need to be dealing with so he can get the main bulk of the business off the ground.  And, it’s sad to say but there are a limited amount of hours during the day that I am of any use to him here.  And for that I feel a lot of guilt.

Guilt seems to be the word dujour a lot of times during this journey of Lupus.  Guilt that I can’t do more things with my kids because I get too tired, the sun makes me sick, I have no energy.  Basically it is a “lets take on a day by day basis”.  And there is guilt that I begin to feel selfish when I need to take time for me, time to regroup and try to re energize. 

Today though, there is mostly pain. Pain in my back, in my lower abdomen, when I go to the bathroom.  And so much fatigue.  Oh, and another round of antibiotics. I just hope I can make it through this day, so that I can look forward to tomorrow!

Just another day in the life….

Of a lupus fighter!

One thought on “Lupus journal

  1. Disabled Chat says:

    I have Bell’s Palsy and enjoy your blog very much. First time I’ve commented, but have been reading here and there.
    Great blog. I enjoy reading it every chance I get and value your opinions!

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