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 gofundme.com 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!

http://www.gofundme.com/Need-Medication

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."








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