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!!

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. 

Saturday, September 6, 2014

Just Thinking

Just thinking day. Wondering when is a good time to give up on the account. Wondering when giving up on Benlysta is a good decision. 

I feel like giving up, but am I too close to a possible breakthrough to give up? What if the next one is the one that helps? 

Right now I am so weak that I can barely walk across the floor. Is it the lupus? Probably. Is the Benlysta in the mix? Probably. Does the means outweigh the end? 

Today I just want to give up.

Wednesday, September 3, 2014

Storming On the Inside

It has rained a few days now bringing with it the extreme pain in my joints and spine. As always, rain puts me in bed. But this time weakness was added to the mix. I've been feeling so weak the past week or so from the Benlysta. According to my MD, weakness is a part of the side effects. When I told him about the treatment, he reacted strongly saying he was very concerned I was on this medication. Said it was a dangerous medication and had horrible side effects. I told him I already knew about the side effects first hand. As for the medication itself, I weighed the pros and cons and decided it was worth trying if it suppressed these darn lupus flares enough to give me a quality of life.

I can't take a walk anymore because I am flaring so badly or too weak to get dressed or the weather (heat and rain) swooped in and knocked me off my feet again. I can't clean my apartment like I use to because I am so weak. The pain sets in and so does insomnia. For the past few days I found myself wide awake. Couldn't sleep a bit. Adds to the weakness. Insomnia due to extreme pain and lupus flares is not fun! It feels like there's a storm on the inside!

There have been rare days when I am able to get out of the house, but as soon as I do, I am paying for it days after. So do I just push myself hard and hope for the best or take it easy and hope for the best? The answer is take it one day at a time. 

Yesterday I heard a college friend's wife had died. She had cancer and just finished chemo and radiation treatments. She died suddenly of a heart attack. She left behind her husband and two small girls. My heart breaks for them. I know the pain of loss due to cancer (brother) and how overwhelming it is to deal with something you can't control. 

Reminds me to be thankful for every moment, even those moments when I am suffering. Kristen was blessed - she wasn't alone and was loved. Those two gifts are far more precious than most people realize. 

I am still trying to reach my goal on to continue Benlysta treatments. My next IV treatment is Friday, September 12. I see the rheumatologist next Monday. Hopefully she will be able to guide me on how to deal with the side effects. My goal is $13,000 and I haven't made it to $1000 yet. So if you know someone who can help in any way, shape or form, please share my link with them. Please share my link on your facebook page. You'd be surprised what a difference it would make!

My sunflower stalk has finally bit the dust. The huge flower at the top toppled it over. I am still amazed how a tiny seed can produce beautiful flowers and tall stalks. It just takes a tiny seed. Just imagine what a difference a life makes! Just takes belief, time and hope! Imagine how tiny a mustard seed is. The Bible says if we have faith the size of a mustard seed, we can move mountains. I have that faith and hope to move this mountain down the road! I just need more people to believe in me and take action.

Matthew 17:20
He replied, "Because you have so little faith. Truly I tell you, if you have faith as small as a mustard seed, you can say to this mountain, 'Move from here to there,' and it will move. Nothing will be impossible for you."