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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

Update

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 GoFundMe.com 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 gofundme.com 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 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!!

Sunday, September 7, 2014

What If

We spend our lives wondering what if. What if I don't get that job? What if he or she does not love me? What if I made another bad choice? 

Ever wonder what your life would be like if you were so alone in the world you wonder if you could make it to another day? What if no one cared about you. What if you spent Thanksgiving and Christmas alone because you had no family? What if the one friend you loved the most said, "I don't need you."? What if you went days or weeks without seeing another person? What if you were so sick you couldn't do the simplest of things for yourself? What if what if what if? What if you felt more invisible and useless every time you walked into a church because most people ignored you?

Many would call this worry. Some would call this life. Yet some know what it feels like to live the what ifs as reality. I am one of the some. 

Unlike many, I have no choice but to live in the world of what ifs. When I go out, my cane draws attention. I gain weight from the insurmountable medications I have to take to survive. I don't like the person in the mirror so why should anyone else? 

The Bible says to "love your neighbor as yourself." The key is you can't love someone else if you don't love yourself. I never mastered the love of self. Instead I have tried to overcome the negative hateful words told to me in childhood that still ring in my ears. I try to overcome my daily obstacles to accomplish at least one thing. I try to overcome the bad choices I've made in life. 

The key to what ifs is I TRY. When you live with a debilitating disease that slowly takes something away from you on a day to day basis, all you have left is hope and trying. 

Keep trying, but remember those who are living the what ifs. They need love, too.