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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!!

Saturday, September 20, 2014

Death By Electronic

My laptop died. My printer died. They say it comes in threes. What is next?

Thursday, September 18, 2014

Just Thinking Out Loud

I've almost decided to stop the Benlysta treatments. The side effects are just too harsh for someone who is alone and has no one to call on when she's so sick. That someone is me. I am reaching the point the weakness isn't worth the benefit (of which I haven't seen yet). The foundation that made it possible for me to get half of the funding for the medication will be requiring each person to repay 25% of the cost each month as of October 1st. 

Cost, side effects, no positive results - they all add up. I'm suppose to have two more treatments before seeing my doctor again. I'll follow through on the two, but if I cannot pay for the medication, what good will the extra stress be on my sick body?

I am always amazed at how overly expensive medication has become. Those who need it cannot get it. Those who don't take for granted the inability of obtaining the medication because of the cost. 

I acquired assistance for half the cost. My insurance won't cover it. I'm doomed to stop because of cost. So in desperation I set up a account. I didn't even reach the $1000.00 mark (goal for medication was $13,000). I don't have an ice bucket challenge. I am not asking for help for some crazy need to make potato salad (he raised over $30,000), and I don't have a freebie to offer. I simply wanted to have a quality of life, something I haven't had in many years now. 

Will never understand the way this world works. I've always been a square peg in a round hole. Be kind to others. Give when you can. Help others when you have the means to do so. Show compassion and encouragement always. But sometimes people like me just don't have the "it" required to function in the world. We are rejected, looked down upon, ignored even in the places where kindness, love and compassion are suppose to be magnified. 

I'm ready to quit Benlysta and just do the best I can. Just can't find the rest of the funds to "hang in there" like my doctor told me to do. 

We all have the same amount of time in each day. We're not promised tomorrow. Just take one day at a time. I've learned to be thankful for each day - one day at a time. Those things many take for granted, I can no longer accomplish. When I do, I'm thrilled! 

So two more Benlysta treatments and back to the doctor for a new evaluation. Just so tired of medications, lupus, other illnesses. I'm worn out.

Monday, September 15, 2014


SICK sick sick! Side effects from Benlysta are bad. Wishing I could do simple things so many take for granted. For now I am stuck in bed fighting nausea, weakness and pain. 

Thursday, September 11, 2014

UPDate -

 Next Benlysta treatment is tomorrow, Friday, Sept. 12.

Saw my rheumatologist on Monday. She had hoped the Benlysta would have helped by now. She encouraged me to stick with it because sometimes it takes longer to kick in. I'm more than willing to stick with it as long as the funds hold out. Once they are gone, so is the medication.

She put me on prednisone again because there was so much inflammation in my body when I saw her. Hate the stuff but this time I have no choice but to take it. The pain has been horrible.

My friend, Amy, visited this week. We met at Asbury University over 30 years ago and have been friends ever since. Even though we ran to and fro and I enjoyed it immensely, my body is now paying for it. Today I could barely walk across the room. Back to bed!

Rain has settled in once again but brings cooler air - so thankful! Looking forward to Fall weather.

Please remember to share my link on your facebook page. Need help in meeting that goal!

Thank you so much!!