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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