Thursday, October 30, 2014

Lupus, Stress and Kevin Spacey

It has been one of those days - a terribly, horrible, no good very bad day! The stress of worrying where the $4,000.00 to repay a grant I received for Benlysta is keeping me awake at nights. Not to mention I'm still paying for the medication itself (the infusion). 

Side effects from this horrible medicine have been strong. This month I had a horrible headache the day after, joints swollen, pain intensified, and could not get out of bed for a week. Geesh!! If the medication doesn't kill me, the worry will! I haven't slept for two days.

Stress is very bad for lupus patients. It causes flares. Flares cause irreparable damage. Damage makes for a terrible life. No quality at all. 

And that's where I am right now. Stressing over the cost of everything. Knowing I can't pay it back alone. Knowing I have no one to turn to for help. 

My pantry is empty. My fridge is bare. The cats are getting low on food. And I'm ready to pull my hair out!

This has been a very difficult month. Now the holidays are approaching. Another stress added to my life. No family. Nowhere to go for the holidays. Magnified emptiness. 

I'm tired of being sick. I'm tired of being tired. And I'm tired of struggling. Stress is killing me. 
 One good thing happened this week. I received a card in the mail from Kevin Spacey. He was thanking me for kindness. I have no idea what he's talking about, but it made my day.

Wednesday, October 15, 2014

Word Of Warning

My apartment is old. The bathtub has horrible stains. I have tried for two and a half years to get those stains out. Yes I' e tried everything! 

Tonight I decided to try a product with Clorox. Burned my lungs and throat so badly. Almost called 911 when I passed out after a severe coughing fit. What stopped me? Cost!!

Fumes are still bad, but I finally opened the window.

If you have a chronic illness, do not use any thing with Clorox.

And no it did not clean the horrible stains. Just made me sick.

Saturday, October 4, 2014


It has been a horrible week physically! Was so sick I could barely get out of bed. High fevers, swollen joints and legs, throwing up, etc. Side effects from Benlysta or the start of a new flare? Not sure. All I know is that it has been a horrible week. 

Haven't sent many updates lately because I'm using my Kindle to go online. Hard to type on a kindle. Will try to do better.

My next Benlysta IV is Friday, Oct. 17th. The foundation that has contributed part of the payments for treatment (since my insurance won't cover it) has informed us we must pay back 25% of the full cost. Fine time to learn of this! My account is dead in the water. I haven't met $1,000 let alone $13,000 to pay for the medication. 

Many prayers needed!!