Thursday, August 28, 2014

Strength Increased

Every morning I've awoken, I have felt wrung out, exhausted, bad. Today once the bad wrung out feeling passed, I felt more like a human being again. Hope of Benlysta working? I surely hope so! 
Once I get through the multiple side effects, I feel better. This time it just took longer. 

The heat and humidity now play a huge part in my flares. I've never been a fan of summer, especially August, but it reminds me the suffering summer flares will soon end once Fall air comes. I've been inside for ten days now. Haven't seen another person in ten days (hardest part). But when I open the door to feed the kitties and get the mail, the heat wipes me out. I keep reminding myself Dothan is in the high 90's with extreme humidity, but my body doesn't seem to understand. Low 90's is still bad. 

Rascal still keeps his spot in the open window enjoying direct sun and heat. What will he do when winter sets in? Yell at me I'm sure. 
His body is adjusted to the extreme weather conditions. Me, not so much!

As I finally woke up from my side effect fog, I realized how very messy my apartment has become. If I don't clean it, no one else will. If I am sick, I can't do it. I didn't realize how much this medication has pushed me down until I looked around. 

Watched the Emmy Awards Monday night because Kevin Spacey was nominated. He was using a cane due to a tennis injury. All I could say was "Welcome to my world!" He will heal and put the cane aside. I won't. I'll be using a cane forever. 

Still have hope this medication will work. I won't go for another treatment until September 12. I see the rheumatologist the Monday before. My last regular MD appointment showed I'm anemic. Surprise! Oh joy. When you have to make a choice between buying food or medication, you can't exactly eat well. 

Just taking each day one at a time. No one is promised tomorrow and I know while suffering from this chronic life threatening disease my chances are less. Yet it does not make me afraid because I know where I'll be once I leave this worn out body. 

Stop and appreciate every part of your day. The things you take for granted today may be gone tomorrow. 

 

Being Thankful

I've decided to appreciate three things about my life each day.
1. I  am thankful for the ability to stand in the shower today. Most take every day actions for granted. For me it is a struggle to accomplish this task because of my lupus flares.

2. I am thankful to have quality friends. Numbers don't matter as long as you have someone to love who accepts and loves you just as you are.

3. I am thankful for God's creatures and the joy they bring. My stray cats, with their unconditional love, consistent presence and the lessons they have taught me. Many days pass without me seeing another person. The cats come by for food and stay for love and a save place to rest. If only people would care as much as those furry four legged friends.

Life is hard, especially when you are totally alone in the world. Add to it the shadows that hang over hoping for a better life, one where taming a shower or cleaning house does not feel like an impossible task, or needing to believe you are still a good person with a compassionate heart having so much love to give. When I was younger I saw myself as ugly, unloved, hopeless. When you have a mother who tells you on a daily basis "I wish you had never been born, I hate you, and no man will ever want you," you tend to believe it. I see that woman  my mother described.

But for me to have a quality life, I needs to start with the woman God sees in the mirror. Yrs I have a chronic dangerous illness that controls my life, but it does not control my soul.

Just recently  a woman flippant said "You don't look sick." Have.g heard it so any times before from other rude people, I decided to say what I always wanted to say ."Really? And you don't look stupid.,"

Even though it was the wrong thing to say, it surely felt good!

I am no different than any one else. I long to be loved, to find my southern gentleman to marry, make a difference in all lives. The only difference is I struggle with systemic lupus and other illnesses. I've been sick for eighteen years. I've waited to die for a long time. Now I want to live with all the joy GOD has planned for my life.

It starts with being thankful.

Monday, August 25, 2014

Just Another Day

It seems like every day is just the same. I haven't seen another person in seven days. I've a friend who would think that was heaven. For me it is overwhelmingly sad. You see she has fait, friends, and coworkers. She has no idea what it is like to be alone in the world.

So I decided to move - to go back to a place where I knew people to be kind, accepting, and loving. After two years of living in the one place I knew I could be loved, I found rejection, loneliness and emptiness. I found senseless drama, spiteful criticism, and misguided opinions. I experienced words with no actions, people with no hearts, and life with no purpose. And the worst part is this town takes such pride in being a loving Christian haven. Turns out it is no different than where I used to live. At least I wouldn't be alone long stretches of time. It seems selfish, judgement al people are everywhere.

I had a discussion last week about death. Took the opportunity to say the one thing that bothers me about dying is my body not being found for a long long time. She said, "You can always call me."

I said, "I can't call you if I'm dead!"

Her solution was to call ahead of time if I am feeling deathly sick.

Do people know that I am sick? Yes. Do their actions show they care? No.

So the next time you complain about your husband, child, parents, remember how horrible it would be if you did not have them.

The hope I have is not in people. It is knowing my purpose come from God.

Friday, August 22, 2014

New Bodies and a New Home

Looking forward:

http://billygraham.org/devotion/gods-provision/






Thursday, August 21, 2014

Always Hope

Every year I plant sunflower seeds, but they never come up. This year was different. Just a good reminder that you never know what a day will hold.


Wednesday, August 20, 2014

Feeling Discouraged

If you read this post, please share it with friends. I'm still trying to raise funds to pay for this extremely expensive Benlysta medication. So far away from my goal.

It would mean so much to me!


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


Tuesday, August 19, 2014

Pushing Forward

It has been a very painful few days since my Friday INFUbYSION. The third INFUSION knocked the wind out of me. I have barely been able to walk from room to room. More time has been spent in bed. These are the Times I feel so alone in the wold, have no purpose and ask God why I am still on this earth.

Today was an early one for me. Early to the doctor. He's a good man. Encourages me to keep going and tells I desperately need a support group. Well I  know this, but you can't make people care.

The pain is a 10 tonight. Everything hurts. So many things I need to do, but am too weak to do them.

I wanted to plant yellow roses so that I could bring them inside to enjoy during this hot summer. Instead I have been bed bound, hospital bound, and experiencing lupus flares. No planting this year.

So when I am stuck in bed, I read and watch movies. There have bee three Kevin Spacey movie on the past two days. I especially enjoyed "Beyond the Sea." Kevin singing and dancing. Makes me smile. Then I go to sleep early only to find him starring in my dreams. He even brought yellow roses.

When you don't have a quality of life, dreams make up for the empty places. Thanks, Kevin, you have brought joy to my life.

Monday, August 11, 2014

A Way to Beat Lupus Depression

Today I just had enough of dropping and breaking dishes (lupus hands), hurting so badly my hair hurt (lupus pain), being stressed and unable to sleep due to lupus aggravation. Even though my body is hurting badly and I want to unzip it and crawl out, I am always amazed at the peace I feel inside. That comes from God. It is a gift no price tag could ever adorn!

I decided to end the day in a hot bath with Calgon and listening to Kevin Spacey sing from the soundtrack "Beyond the Sea." Great way to unwind, relax the pain, and just dream. I think so very highly of Kevin ever since I met him many years ago. His kindness and compassion was so very touching to me. He will always be a star in my book!!

Maybe the bath and songs will bring peaceful sleep and good dreams. Kevin, you can sing "Dream Lover" to me any time!!


Sad to Hear

So sad to hear about Robin Williams' death. What a wonderfully talented man! My heart goes out to his children!!

Sunday, August 10, 2014

I Wonder

Sometimes I wonder why I fight so hard. Life has become difficult to maneuver alone. This crazy lupus illness has robbed me of a quality of life. I wake up and wonder if I should get out of bed at all. Seems like every day has taken over as being a bad day (especially at the holidays).

So instead of giving into this horrible mindset, I fight. I decide to go the next step and take the Benlysta treatments to control the multiple lupus flares that rob me of a quality of life. I push myself when I know I shouldn't do so. 

When I feel like nothing will ever improve and I just want to give up, I hear a still small voice telling me to "keep going." 

So I keep going. I keep hoping for results. Waiting. Hoping. Then I remind myself God still has me open my eyes for some reason every morning. There must be something in my life I must do. If it is to encourage others who suffer from this horrible disease or just have an affect by accomplishing the little things during the day.

My next Benlysta IV treatment is Friday, August 15th. I'm still suffering from the side effects from the last one, but if I can make it through the third treatment, I will only have to go once a month.

These treatments cost $28,000.00 a year. I found funding for $15,000.00. I have to come up with the last $13,000.00 on my own. 

If you would do so please share my link on your website. You'd be surprised how one act of kindness would make a huge difference. $1, $5, $10 donations add up quickly and I would appreciate every penny!

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





Thursday, August 7, 2014

Signs of Our Times

It is in the Bible:

http://www.bibleinfo.com/en/topics/signs-jesus-coming


Wednesday, August 6, 2014

Side Effects Kicking In!

The Benlysta side effects kicked in yesterday. High fever, pain, severe headaches. But I still have hope this treatment will give me a quality of life. Problem is it costs so much and I have to raise over $13,000 to meet the need. If you haven't visited my gofundme.com page, please do! Share it on your website, too.

I have also found myself affected by the heat and humidity today. Not sure if I am more susceptible to the barometric pressure because my system is so weak. Yes, I feel so weak! Sometimes you have to be knocked down in order to look up. Today I feel that knock down.

I opened the window for Rascal today and he's soaking up the sunshine. When he comes out for a break, he crawls into my lap. He's a warm kitty! 





I miss being able to sit in the sun. If you weren't aware, sunshine flares lupus. I am very sensitive to it. So I have to enjoy watching Rascal soak it up for me. For those of you who are not animal lovers, I feel sorry for you. Rascal is a treasure. He's my best friend. Many days pass when I don't see or even hear from another human. But Rascal is there and I am ever so grateful for him.


Sunday, August 3, 2014

Unknown Future

 "Never be afraid to trust an unknown future to a known God."  Corrie Ten Boom

Suffering from an illness like systemic lupus always brings surprises for each new day. What I once took for granted, like standing in the shower, walking a short distance, standing at the sink for more than ten minutes, etc., now becomes a challenge. Some days I fail the challenge and some rare days I win.

Our society tends to dwell in their own world. Rarely do you find people visiting someone who is alone and sick anymore. Rarely do you find neighbors taking time to stop and talk to one another. If we did, we'd find out how many needs are being overlooked, how many opportunities go by to make a difference in someone's life.

I can't help but believe God is disappointed in us when we fail to do something to help someone in need. If He said for us to go about doing good, wouldn't that include helping someone you know needs help?

I've suffered from systemic lupus for eighteen years now. It has taken its toll on my mind, spirit and body. The multitude of illnesses spawned from this disease has taken a toll as well. Even though I do this alone, I know I only have to ask God for help and He will answer. I need help!

I no longer take for granted the ability to stand up in the mornings, being able to walk across the floor, stand in the shower, be able to go outside, etc., for those things have become very difficult for me to do.

I am thankful I am able to get this lupus treatment with Benlysta and have hope that tomorrow I may be able to do more mundane things others take for granted.

As for the side effects, headaches, fevers, and nausea set in. Once it runs its course, I hope for better days.

So I'm trusting my unknown future with the known God.

Friday, August 1, 2014

Benlysta Round Two

Went in for my second Benlysta IV treatment today. Was a day filled with waiting, getting sick, waiting, etc.

The nurse had to stick me three times to get a vein. After the first two, she swapped over to a new nurse who was able to do it first stick. My body reacted to it and I threw up for half an hour. 

Once I was settled down, they brought me something to drink and then I waited again. It was two hours before they received the IV from the upstairs pharmacy. Then one hour to administer.

It makes no sense to me. If you know I walked in the door, why didn't you order the medicine then? They have to mix it up, warm it up and then send it down. I was told it takes about fifteen minutes. 

Then why the long wait? I've learned to wait, but the friend who took me in couldn't understand why things were so slow. 

I said, "Welcome to the medical world!"

I then told her horror stories of my hospital and ER experiences. She decided if this was the worst that happened, it was nothing compared to other times. 

I agreed.

Once the IV was finally started, they brought us a box sandwich and cookies. Wasn't much, but I was thankful to have something in my tummy. 

Now we wait for the side effects. Last time it took two days to kick in. I hope this is what happens again. If I know it is coming, I can handle it better.

So two behind me and one more to go on August 15th. After that I go once a month until the funds run out. I've put a lot of hope into this medication and would like to continue it, but it all comes down to cost. 

My Go Fund Me site has a great start, but seems to have stalled. If you can possibly help, please visit and donate. $1, $5, $10 - it all adds up and goes to pay for the Benlysta. Wouldn't it be amazing if an anonymous donor appeared and fulfilled the rest of the cost! I believe in miracles!

Here's the link:

http://www.gofundme.com/bbfsgw


Happy Belated Kevin Spacey!

I always post a birthday wish for Kevin Spacey, but this year I was so sick I simply forgot to post it. His 55th birthday was July 26. 

May this be the best year ever!