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.

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