Monday, July 28, 2014

GoFundMe.com - For Benlysta treatments

 NEXT TREATMENT: Friday, August 1, 2014

 Today I started feeling more like myself again. The IV medicine had a powerful punch to my system. I suffered many side effects, but today I feel more like a human being. And for the first time in years my spine isn't in severe pain. There is HOPE!


Please share my link on your page. You might be surprised at what a difference one act of kindness would make!

My doctor has prescribed the drug Benlysta. It is designed for severe systemic lupus. It is also an IV drug. I'll be going to the hospital for treatments once a month. The first month I'll have to go three times. This is the only drug for systemic lupus.

I've suffered from this horrible disease for eighteen years now and it has done quite a bit of damage. This is my last hope to slow it down and give me somewhat of a quality of life. Problem is it costs $28,000 of which my insurance won't cover. I have received a grant to cover $15,000.00 and only need to cover the rest along with transportation costs of $10 per trip.

It has been a difficult journey suffering from this disease. I have no family and no one to care for me when I cannot care for myself. With your donation of $1, $5, or even $10 you can make a huge difference in the life of someone who desperately needs your help.

Thank you from the bottom of my heart!


PAGE LINK: http://www.gofundme.com/bbfsgw





Saturday, July 26, 2014

Words for Thought

Don't walk in front of me I may not follow.
Don't walk behind me I may not lead.
Walk beside me and be my friend.

Tuesday, July 22, 2014

Sometimes I Just Want to Scream!

Sometimes I just want to scream!! It doesn't really change anything. Only makes me cry harder. But sometimes I feel like it is the only thing that helps get past the way people treat others. Instead of "living" with lupus, I feel as though I'm "existing" with lupus.

So many things I am tired of: 

1. I'm tired of someone judging another and telling them what "they need to do to feel better" when they really don't have a clue.
2. I'm tired of someone forcing me to have to explain my illness and why I'm taking a medication that has so many side effects. Would they do this to someone with cancer? No. 
3. I'm tired of someone thinking they know it all, sharing their "non-expert" opinion and making life harder on those who are suffering when they decide to turn their opinion into gossip.
4. I'm tired of having to listen to someone talk non-stop about themselves and never asking how I am doing. (Yes, I am a listener, but it would be nice for someone to listen to me for a change.)
5. I'm tired of not having anyone I can trust to listen and not pass judgement. 
6. I'm tired of my experiences above all come from people who call themselves Christians and judge me because I am not able to go to church. 
7. I'm tired of going days without seeing another human being. 
8. I'm tired of being sick and tired of being sick and tired (it isn't my fault!).
9. I'm tired of being a prisoner in four walls of my own home.
10. I'm tired, just plain tired, of experiencing the worst of people. 

This is the result of my tiredness:
1. I will always listen to someone who needs to talk. Not only will I listen, I will CARE.
2. I will never put anyone in a position to have to explain why they are sick.
3. I will not only care about a person's need, I will put action behind it. 
4.  I will never give my "expert opinion" to anyone unless they ask.
5. I will never insult anyone by passing judgement on what they have to endure in this life.
6. I will never judge another person who does not go to church.
7. I will never pass someone in need and ignore them. 
8. I will never make someone feel invisible and not worthy of love, encouragement, acceptance and will put action behind this.
9. I will remind myself the few who make it worse on people who are sick will someday reap those harsh words and actions. 
10. I will also remind myself there are more good people in this world who counteract the bad.

If only people would realize every action and word affects the person they encounter. What a huge world of difference it would make.

Sunday, July 20, 2014

Sunday Side Effects

Side effects kicked in yesterday. Terrible headaches, high fever, chills, etc. I never feel so alone as when I am sick. Just wish I had a friend to be there.

Now I know what to expect from Benlysta ad what not to expect from people.

Friday, July 18, 2014

After My First Benlysta Treatment

Yesterday was interesting! Had to wait four hours to get my treatment. There was a problem with the fax to the pharmacy and no one knew it. In the mean time, they took good care of me. Fed me two meals, gave me a gift card to Walmart (for my inconvenience), and monitored me well.
The only side effect I seem to be having is being wiped out. I've been so very tired since coming home yesterday that I've slept well. I even slept most of today.

As for whether it is working, I won't know until several treatments have been administered. I go back on August 1 and August 15 before I begin the once a month treatments. 



I'm still so very tired. Can't function well enough today to share much. 








Wednesday, July 16, 2014

Infusion Thursday

My Benlysta INFUSION begins Thursday morning at St Joseph East Hospital INFUSION Center in Lexington, ky. Time is 8:30 am. Please remember to say a prayer. Side effects are brutal.

Still trying to raise funds for payments.

http://www.gofundme.com/bbfsgw


Tuesday, July 15, 2014

Blessings?

Even though I had to push myself, I decided to attend the summer gathering of my Bible study group. They gathered at one of the ladies' homes, shared and prayed. I will never understand why I always feel so alone in a group, but I do. I call this group the "out of site, out of mind" group. Even though it is made up of much older women who have gained wisdom throughout their lives, it makes me wonder why their wisdom hasn't reached to active compassion.

I sat silently just listening to so many say, "The Lord has blessed us so much, our family is...., we traveled to..." As I listened to all of this I couldn't help but wonder why people don't reach beyond their own families. Not one person shared anything past their own. Has society become so consumed with themselves that they don't see the needs around them? 

As I was leaving, I couldn't help but over hear the hostess say the same thing, "God has blessed us so much." I am glad He has. But it made me fall into a questioning session of my own life. 

I have been so sick the past year and dealing with all of this alone. No one visits my home or calls to check on me. Someone said once, "I don't like being alone like you." When did I say I liked being alone? It is a terrible struggle to move day to day, to function, to find peace within myself. 

I can't help but ask God, "What did I do wrong?" 

This afternoon my thoughts dwelled on how badly I feel when I attend a church service, a gathering, etc. I feel more invisible, more alone, and find myself in more tears. This is not what God intended. 

When I feel overwhelmed like I am right now, the stress in my body increases and so does the illness. I tell myself I can cry at home for free. I also tell myself not to get used to people because they don't stay. If someone gives me advice ( I never asked for) in the form of "get out and meet people," I think to myself, "Spend a Christmas alone and tell me how much people care." 

It is so easy to judge a book by its cover. Problem is unless you show kindness and compassion to someone outside your comfort zone, what good have you done?

I've heard many say it is a sin to see a need and ignore it. I believe this whole-heartedly. Worse is to know someone is suffering and ignore them. 

Today I feel so overwhelmed and alone.

Sunday, July 13, 2014

Square Peg In A Round Hole

It is hard to function when you're chronically ill. You don't have the strength to do minor things let alone harder activities like work, clean, etc. Because we live in a world where being different isn't exactly a welcome label, chronically ill people tend to spend a lot of time alone.

Through this illness I have learned many things most people won't. I have learned that family members are the only ones who will take care of you when you are sick. If you don't have anyone, you're on your own. I have learned people would rather prejudge you and pretend you don't exist (i.e. you become invisible) instead of taking time to get to know you as a person. You become an "it." I have learned to tell myself it is their loss not getting to know me.

I have learned the hard way that no matter what I have accomplished in my life in the past, it doesn't seem to count toward the present. I worked hard from the time I was fifteen. I focused on my school grades and received scholarships to college. I worked my way through college. I taught junior high and high school. My life mattered to many youth who walked through my door. I took care of my mother, my father and only brother when they were bedridden, sick and dying. I buried my father and brother and dealt with the grief alone. (My brother buried my mother). I worked in two different churches and tried to overcome the horrible treatment I received in both. I have to fight insurance and hospital problems by myself. I have to deal with life by myself.

I am alone in the world - a square peg in a round hole - never fitting in where love should be. Not even a church family has pulled in this wayward soul who has struggled so hard just to make it through the day. I have also learned that no matter how much you try to explain how it is in your life, people still don't get it! I have also learned that life would be so much better if people gave what is free to give - love, support, encouragement, hugs - and don't ignore the one soul who needs these things so desperately.

I have learned to listen, truly listen, without interjecting my own experiences. Sometimes you need someone to listen and not compare.

 I have learned that people come and go, like you one minute and hate you the next, but God is always the same. His love never changes. He meets needs when we ask for help. I ask a great deal for His help - and love.

Even though I have learned these things, it is never easy to open my eyes in the morning and face all the problems the day holds. God never intended for us to be alone, but this is a broken world, one filled with sin. Just because God never intended for us to be alone doesn't mean we won't be alone.

Today I feel overwhelmingly alone. And it hurts.

Friday, July 11, 2014

IV INFUSIONS BEGIN

After all the built from doctors' s office, I finally start Benlysta infusions on July 17 at 8:30 am.I am still short $13000.00 and really need your help! With the cost of 're infusionS have included gas money expense for each trip into Lexington. Please consider donating $1, $5, or $10. Thank you from the bottom of my heart.

http://www.gofundme.com/bbfsgw


Wednesday, July 9, 2014

Amazing!

And I don't mean in a good way! Amazing how people group everyone together when it comes to illness. Last night I was told someone I knew was going through way worse a situation than mine combined. How on earth does that person or anyone else for that matter know what situation healthwise I am in?!

I wanted to ask her the following questions:

Does the friend have family caring for her?
Does she have all the healthcare and medications she needs to survive?
Is she able to get herself to the grocery store? Doctor's office? Hospital?
Does she have a doctor who cares?
Is she loved?

All of these things make it so much easier to deal with any crisis of a health concern. When you don't have any of the things above (which I don't), it quadruples the affect of illness.

What rule of thumb did this person use to measure my struggle with someone else's? She didn't. She just flippantly told me my struggle was not as important or as difficult as the person I mentioned above.

How truly wrong she is!

I can't answer yes to any of the questions I wanted to ask. I'm overwhelmed with sickness this week simply because I was exposed to too much sun this weekend (via yard sale to pay for meds and food).

Don't do this to someone you know who is sick. You died and made you God? Who gave you the right to pass judgement on someone who is suffering alone?

----------------------------------------------------------

Today in the news I heard of a guy who set up an account on line asking for money to pay for ingredients for him to make potato salad. It has reached over $70,000.00. I can't even find the money to pay for the rest of the Benlysta so I am unable to get the medication I desperately need.

What is wrong with this country?? Priorities are so screwed up. Someone said "people love to give." Obviously they love to give to stupid things and not much needed things. Another person said she set up an account to try to save her home and got nothing.

What is wrong with this country? People?

I can't even find money to buy cat food.

Monday, July 7, 2014

Too Much Sun Exposure!

I experienced too much sun exposure this weekend. Now my body is swollen, in pain, and I'm suffering once again. For those who are just learning about systemic lupus, STAY OUT OF THE SUN! It isn't worth the pain! I'm not talking about sunburn. Just a little sun exposure will cause a huge flare. At least that has been my experience.

Too much sun exposure due to yard sale and out with a couple of friends. I've suffered from this horrible disease for eighteen years. You'd think I'd learn by now!

Sunday, July 6, 2014

AHHHHHHHH!!!!!!!!!!!!

Just needed to scream. It has been a harrowing weekend. Friends from my college years gathered for a reunion. Unfortunately for me, I participated in the city-wide yard sale. Needed the money more than playing. Didn't get to go to dinner Friday night because I was so very tired and felt so bad. I knew they would gather for a long time afterwards and I had to be up and going at 6:00 a.m.
Not a good combination when you stay out late so I didn't.

Still woke up at 2:00 a.m. and never went back to sleep. But at 6:00 a.m., I was up and dragging boxes out of the apartment onto the yard, setting up tables, and praying God would give me strength to get through it.

So thankful for Chris who came out to help me set up for the sale and kept me company. I don't think I would have survived otherwise.

We had lots of traffic, but very little sales. Five hours of yard sale and only $100 made. I am so very thankful for that $100, but have made so much more in the past. Had hoped for more after so much work on this one. Ended up taking several boxes to the local Community Center store so that they could help others.

After lunch, Chris dropped me off and I was heading to bed when the phone rang. It was my friend, Debbie, who asked if I wanted to go to High Bridge with everyone or if they should just come by. I was so weak at that point that I chose the latter.

Everyone piled into my small living room, sat around and talked. I just listened mostly. When all was said and done, they piled into their cars and headed to High Bridge. Afterwards they went to dinner (I wasn't invited to that one). They were also having lunch Sunday. I wasn't invited to that one either. They did the obligatory drop in and left me.

So I wasn't surprised. After thirty years, I had only seen a couple of people before then. I was hurt though. Listening to "memories" being shared yesterday, I remembered how these people made my life so much better thirty years ago, how I gained some self esteem after leaving my horrific home life in Alabama to come to Wilmore to go to Asbury. Now their lives revolve around spouses, their jobs, their own families.

I just wanted to scream how sick I had been, am still so sick and just wish someone cared about me! Anyone! But I realized when they left to go home today, nothing had changed. I wouldn't hear from any of them unless they passed through Wilmore again. It wasn't that nothing had changed. It was that Everything had changed.

My friend, Amy, who was unable to come pushed me to attend the gathering this weekend. She, too, had forgotten how sick I am, how very little strength I have, and that minimum amount of strength would be needed to finish the task of this yard sale.

I just can't help but wonder why people don't stop and think about the person who is alone, suffering, and wished someone cared.

I am a firm believer that actions speak louder than words. Lack of actions speak even louder. I experienced the latter.

Today after reality hit me so hard, having been exposed to sun yesterday and am now so swollen I can barely move, I am more convinced than ever that as long as I continue to physically go down hill from this horrible disease, my life will become more empty from people. I have lost so many friends over the years just because of this horrible disease, its affects on my body, and being pushed into a lifestyle (disability) that I did not choose.

Over two years ago I had someone coming in to take care of me because I couldn't do it anymore. The director of the program told me she had seen so many family members sign up for that program so that they wouldn't have to deal with their loved ones anymore. She had seen people walk away from sick people. She had confirmed my life.

After their final lunch today, everyone will go home to their own lives. Those who choose to do so will keep in touch with people they care about. Others, like me, will be left alone in a world where people don't have time to care. Sometimes I feel like a world of one.

A local friend, whom I rarely ever run into anymore, told me to stop by the store sometime. He told everyone I stay closed up in my home. If he cared enough to ask, he might find out this horrible illness has made me bedridden more times than not, so very sick I only go out to the doctors and hospital, and that I am having to struggle with this alone.

He would also find out how I lost my mother when I turned 25, how I worked full time and took care of my dad and only brother until they passed away a few short years later (by the time I turned 35), and that they were the last members of my family (with aunts, uncles, grandparents already passed on). He would have learned how hard it was for me to do this on my own, no help from others, and how much of my soul died with them.

He would have learned that I have been alone in the world for a long time now and perhaps wouldn't just flippantly say words that were so untrue.

But like everyone else, he will continue to see me with blinders on. He will see his life, his friends and family and just make snap judgements when I cross his mind (which is rarely).

I have learned so much from being sick. When I meet a person, I try not to jump to conclusions because I do not know what they are struggling with or suffering from in their day to day life. How I wish other people would do the same!

I was unable to sleep last night with the hurt I felt both emotional and physical. My body is in so much pain that I can barely walk. So I have finally decided a sleeping pill will have to cure all ills by luring me into sleep and out of a world of pain.

Today I just want to scream because I hurt so badly!

Wednesday, July 2, 2014

Fifteen Years Ago

It was fifteen years ago July 3, 1999 that I had a great adventure. Meeting Kevin Spacey in NY. Hard to believe it has been fifteen years. He still makes me smile.



Here's the story written fifteen years ago:

Meeting Kevin Spacey in NY "Iceman Cometh"


I met Kevin Spacey on July 3,1999 in NYC after "The Iceman Cometh" on Broadway, my first and only Broadway play. We finally got tickets for my best friend and me to go see the play, "The Iceman Cometh." Let me say right now without her help this dream would never have come true. I ADORE Kevin. He's the one man who can walk into a room and literally tak...
e my breath away! We went to NY, saw the play, stood at the back of the crowd and came home the next day. I move up a few people and he leaned over my left shoulder to sign a photo. His face was two inches from mine. I nearly died. We arrived back home that Sunday and there was a message on my answering machine, "Kevin Spacey would like for you to come backstage to meet him after the play". Message was left Friday. I got it on Sunday. I live alone. There was no one home to call me and relay the message. I cried and cried as my best friend just stood there saying, "Unbelieveable!" I had forgotten I had written a letter to the theater to see where the actors would come out for autographs. It was important that I not be exposed to the heat or if I could get there for the matinee, not be exposed to sun as it activates lupus. I had written only to inquire about the location. I told them why I needed to know as I was sick and couldn't endure the heat. The letter was passed on to Kevin.

After pulling myself together from missing a wonderful opportunity, I called his assistant back and asked if we could do this again the next weekend. So my friend and I flew back to NY the following Friday. By then I was really sick from a lupus flare and the heat and travel caused me to swell and have to use my cane to walk. I had two braces on my knees because the joints had become swollen and it was hard to walk. My meds had added weight to me and my face. I felt like an ugly duckling and was so afraid he would have that ever familiar look of fear I've seen on other people's faces, the look of "oh she's sick, don't touch".

We went to the theater around 10:30 p.m. to stand near the door. When we arrived we saw Kevin looking out the door. I was terrified as it really surprised me. I tried to talk my friend into portraying me for the moment because I looked so horrible from the illness and meds. I was terrified he would walk into the room and would turn away from the sickly site of me. The man at the door said, "Oh, we've been waiting for you" and said Kevin had just looked out the back door to see if we had arrived yet. Then I was scared. We sat in the green room listening to him give his final speech over the intercom and then he walked to the back door past us. I almost fainted. He stopped in the door and said, "Mary?" and I went deaf. I stood up, he hugged me, and we had a photo taken. Then we spent fifteen minutes with Kevin talking about life, the play, his plans later after the play, my life. He was so compassionate and understanding, hugged me twice and never once looked at me like I was a sick pathetic soul. I actually felt like Cinderella. Before he had to go back onstage for bows, he took my hand in his and covered it with the other, held it a moment and kissed my hand and thanked me for coming all the way back from S. Alabama just to meet him. And yes, ladies, he has the most beautiful brown eyes and his hands are so large and so very soft!

I found out also that the week before he sent someone into the crowd to look for me and couldn't find me anywhere.He also left a message for me at the box office. We had tickets already so didn't need to stop by the box office. He went to great lengths for this to happen to me.

I have only one regret. My friend says I'm silly, but he asked what we were doing on Sunday before leaving for home that evening. We said we were going to the museum. He said he hadn't been to the museum in a long long time. Normally, I would have said, "Come go with us", but I didn't because of whom he was. Now I regret at least not saying it....why didn't I say it?

It was indeed one of the most beautiful moments of my life and I will treasure it always. I think about it when I go for medical tests for my lupus, or am in the emergency room or hospital. That memory is my positive thought. I'll never be able to repay him for what he did for me that day. He has a wonderfully big heart, is extremely intelligent, and is so very compassionate.

Someone asked how I got the photo signed. This didn't happen till almost three years later. A friend of mine's aunt played bridge with Kevin's mom. The aunt told her my story and how I forgot to get an autograph when backstage. Mrs. Fowler told me to send it to her and she'd take care of it. I sent it, a letter to her, and a SASE envelope to return it in. About eight months later, the photo arrived back to me autographed and sent back from Kevin. So I guess this story was a Trilogy of sorts.

Tuesday, July 1, 2014

Remembering My College Years

This weekend old friends from college will be gathering. I won't be able to gather with them because I'm participating in the Wilmore Yard Sales. (I need the money more. I need cat food and people food.) I just don't have the strength to do both.

Not being able to function like a normal person, my body has cried out in pain this week and last as I gather items for the sale. Rain increased the pain and swelling. I also knocked over a radiator heater onto my right foot. It is swollen. Broken? Who knows! I can't feel anything past my knees so it is hard tell if something is broken.

I ran across this song today: https://www.youtube.com/watch?v=DuXB1a3NBCw

LOVED it in college and still do. So I'm saving it to my site. Enjoy if you like.

Just To Note

Never make promises you don't intend to keep. Never just talk for the sake of hearing your own voice. Words have the power to hurt or encourage. Never hurt. Make sure your encouragement has actions behind it. Otherwise you are just blowing hot air.