Monday, December 29, 2014

Sad Day

Today started out very sad for me. I found one of the neighborhood stray kitties dead in the box by the door. Was such a sweet little soul. Always made my door the last stop of his day. I saw him in the box two days ago sleeping on the warm blanket inside. He let me pet him. Wasn't there yesterday. He must have come back in the night to a warm spot and passed on.

Since I don't have anyone to help me, I pulled myself up, grabbed the shovel and dug a hole in the far part of the backyard. Took an hour to do it. Then I put the baby to rest.

I have been in pain all day - both physically and heartbroken. The only solace I can find is that the sweet little soul found a warm bed, food and water at my door before he left this world.

Every living creature deserves to be loved. Every one who dies deserves to be mourned.

Friday, December 26, 2014

A Christmas Day

I had dinner with a friend last night. It was an unusual Christmas dinner held at her church. With us were several homeless men who were staying the night at the church. The ministry offered is for homeless men to have a place to go on Thursday nights. Other churches cover the remaining part of the week.

Quite a few members gathered and prepared the meal. They then served it to us. It was a humbling experience.

One of the homeless men spoke to my friend explaining why he was late to arrive. He had visited his brother early in the day. Broke my heart that he had family but was having to sleep at a church on Christmas night and any other place he could find the remaining time. I could never have allowed my brother to be homeless no matter what the circumstances. I wish I could have said something to every one of their family members - love your family while they are here, look after them, home is where they are.

My mother was not the nicest person. She made it clear she never wanted another child (and told me so every day). My father became an alcoholic and our lives suffered from it. I never became close to my brother until I started college. But when time came, I took care of my mother, brother and daddy until they passed away. I'd do it all over again. I cannot begin to understand why people turn their backs on family.

I came home to a very cold apartment, but I had a roof over my head, a bed to sleep in, and food in my pantry. I am forever grateful for God's care in my life. Without Him, I could not have made it this far.

Christmas is not about gifts, parties, and family gatherings. It is about love in the purest form. Everyone deserves to be loved.

Wednesday, December 24, 2014

GOODIES ON THE PORCH

Thank you to the kind soul who left a box of presents on my Porch!! RASCAL loves his toy and treats.

Tuesday, December 23, 2014

A Personal Christmas

When Christmas season comes around, many people deal with it in many different ways. Those who have families gather together to celebrate. But those of us who don't have family anymore try to find a way to deal with being alone at Christmas. It seems that the lack of family is felt so strongly this time of year.

I don't expect everyone who reads this post to understand. You have not walked in my shoes. You haven't walked in the shoes of others who suffer at Christmas. So how can you understand.

It is hard to handle. No other way to explain it. 

This time of year I feel like a rejected stray left out in the cold. Nowhere to go. Just wanting one thing in life - love. 

Do I share this to make someone feel sorry for me? No. No one wants that. I just want the same thing every person on this earth wants this time of year - a family, love, to fit in. 

Please don't cast off your leftovers for me to eat alone. Invite me to the original dinner. Don't feel sorry for me being alone. I do that enough for the both of us. Don't give me second hand invitations when your original plans don't work out. No one wants to be a second thought. I merely want to feel welcome, like there is a place for me, a secure loving place. I miss having that place in my own family and don't know how to get it back. 

This is a very hard time of year for many people, especially those who are alone. Instead of wrapping yourself so tightly into your own family, let someone else in from the cold. 

Life is hard enough without adding more pain and grief to someone's existence. Remember kind words are more soothing than a hateful bag of judgement. Some of us are very sensitive and feel things deeply. When we are hurt, we forgive, but are guarded to not forget lest history repeats itself. Don't kick someone when they're already down. Lift them up instead or get out of the way.

Christmas is especially hard this year because I've been fighting illness. Don't know what caused it, but it adds to the already heavy weight of lupus flares. 

If I can be blessed with peaceful sleep, I'll be most thankful this year. If I can find a new way to deal with being alone then the burden won't be as heavy.  

Life is one day at a time. Thankful for the small things. Being sensitive to those who are suffering. After all, who doesn't want someone to care?

A Snow Surprise

Should have posted this sooner, but have been under the weather. 

Saturday I went to the Kentucky Theater for a "Downton Abbey" preview. Turns out they showed the first episode of 2015. 

When I awoke way too early Saturday morning, I decided to turn on the tv to get the weather report. The weather man said the following: "No snow expected today." 

So imagine my surprise when I walked out the door to find a dusting of snow on the ground. Wilmore had indeed received snow. While walking into the theater, big snowflakes were falling in Lexington. Perhaps he should have looked outside his window that morning!

Slight chance of snow flakes for Wednesday night into Thursday. Could it be a white Christmas? Wouldn't that be nice!


THANK YOU!!

This morning I woke up feeling so alone. Just wishing I could sleep through Christmas so the aloneness and loneliness would not feel so bad. Problem is I could only sleep for two hours last night. Rain came in and a new weather pattern proceeded to beat on my body.

This afternoon I received a light in my day. Beautiful flowers and cookie jar base. Cinnamon sticks and cedar sprigs add to the wonderful smell.

The one who sent it did not sign their name. Only said they read this blog. So I want to say thank you for a beautiful gift. Means so much to me.



Wednesday, December 17, 2014

A Christmas Post

There may not be presents under my tree, but I enjoy decorating for Christmas. The lights suck me in every time. They suck Rascal in, too. I've pushed him off the counter too many times this year because he thinks he's an ornament. 

I love ornaments and have collected several over the years from friends. Getting an ornament means more to me than anything else. My favorite ones are those with family pictures. Even though they have passed on, this way they are still with me. 

The larger nativity belonged to my brother. He bought it thirty years ago. It remains the dearest one I own.

If you have a home to go home to this Christmas, go! Treasure the time you have with family. You don't know what you have until it is  gone. 



Just sharing photos here. Couldn't post without adding one of my best buddy, Rascal. 





LOVE LOVE LOVE!!

http://www.teleflora.com/flowers/bouquet/telefloras-holly-days-centerpiece-599494p.asp?s=t&srccode=EM_PR_CH_141217_B&promotion=EMP1217B&sp_mid=10182595&sp_rid=bWFyeWpjODNAYW9sLmNvbQS2&spMailingID=10182595&spUserID=MTk3Nzk1NTM3OTgS1&spJobID=441384323&spReportId=NDQxMzg0MzIzS0


Just love this!! Wish it wasn't' so expensive!!

Tuesday, December 16, 2014

Another Night of Sickness

Repeat last Tuesday night. Throwing up, fever and chills. Why? Who knows. I feel so alone and helpless. The wet, cold weather is beating my body to pieces today. 

I'm too sick to walk downtown to get ginger ale and tummy meds. 

Looks like another Christmas alone. Sometimes I as myself what I did to go through all of this. I feel like giving up. 

Just hoping whatever this is passes soon. Would give anything to have someone here through tough times.

Saturday, December 13, 2014

AT THE TOP OF MY WISH LIST

Today I have only one wish for Christmas - to pay off the $1,000 in medical debt hanging over me. The burden is so heavy. It would take a miracle to meet this need, but I believe in miracles. 

Peace is a gift.

Friday, December 12, 2014

A NIGHT OF SICKNESS AND REFLECTION

I'm typing on my Kindle because my computer is having problems. So if I misspell a word or two, overlook it.

Yesterday was horrible. I started feeling sick around 3:00 pm. Throwing up every fifteen minutes. Lasted for four hours. My throat is still raw ad I have not slept. Fevers and chills.

An hour ago I started to feel better. 

I know what it feels like to deal with illness alone. I have also learned to take things moment by moment. It is not fair for me to expect anyone to relate to this unless they have dealt with it.

The fact remains that every person will reach a point of illness, suffering and being alone. I try to remind people not to judge someone because of their life circumstance because you are not immune to the same path. Mine started in my mid 30's. As time passes, grief, illness, being alone all become your life.

So many times I find myself saying I understand now. It took my life changing drastically to learn. 

Don't learn the hard way.

Compassion is a gift. Advice is cheap. Love instead.

When I am as sick as I have been the past two days, I remember experience is the best teacher. It softens your heart to others. I wonder time and again why suffering has been a huge part of my life. Truth is I would not have a compassionate heart without it. 

The Bible teaches sin can destroy you. I believe seeing someone in need and doing nothing is a far worse sin. 

Christmas is the hardest time of the year for me. Loss of family is magnified. So many people hurt this time of year because of lost loved ones. Time and love are far better gifts than those wrapped in paper. I yearn to go home this time of year. There is no home to return to, no family,  nothing. I cannot change this. I can love, care, listen, and be there. Small gifts but worth more than gold.

Friday, December 5, 2014

Cold and Wet!

It is a cold, wet day in Wilmore. Has been a cold, wet week. The little girl kitty hasn't moved off the end of the bed. Rascal is curled up on the sofa under a blanket. Buddy, who refuses to come inside, is curled up under a big, heavy blanket in a deep box on the covered porch. And I am typing this entry with gloves on! 

It is always colder inside my place than outside. About ten degrees colder. When the heat isn't running, there is a huge cold draft flowing through this place.

For those who suffer from systemic lupus, you probably have difficulties when it rains or turns cold. Stiff, painful joints, swollen joints, even physically sick in other areas. Moving to KY was my dream, but I think the winter months are going to be the death of me.

When I am able to stand at the sink, I keep the hot water flowing just to thaw out my hands. Eases some of the deep pain. 

This cold/wet period has put me in bed longer than I wanted to be. Just sometimes I wish I could live in a warm place without having to choose between medications, food, medical bills, etc. 

Today I think I'll just take a cue from the felines and wrap up in a warm blanket. Nothing will get done, of course, but at least I can stop suffering from the inside cold.




Wednesday, December 3, 2014

Christmas Wishes

I've made a Christmas list ever since I can remember. When I was a young child, my Daddy took care of it. Later my brother took care of it. It wasn't much, but I was thankful to receive anything. The year I turned 16, my brother couldn't afford Christmas. Neither could my Daddy. My brother gave me a Christmas record album that year. Being 16, I was disappointed, but we did have a Christmas dinner I will always remember. No matter what, my Daddy worked hard and provided for his family. 

I still have than record album even though I don't have a record player. It has been on my wish list for a lot of years. 

Now I'm alone. Parents gone. Brother gone. Other family members gone. Christmas is much harder to deal with as each year passes. 

This past Thanksgiving I just wanted one thing: to go home, the place where I grew up, crawl into my old bed, sleep for hours, wake up with my family there. I just wanted to go home. Sometimes what we want and long for cannot be given. When I feel so homesick I cannot stand it, I try to go back to good memories. 

This is my Christmas list. Even though it will not be filled physically, it is fun to make one each year. 

1. A record player

2. A folding kitchen cart - http://www.hsn.com/products/origami-folding-kitchen-island-cart-with-casters/7536224?query=7536224&isSuggested=True&

My kitchen has such limited space that I don't have enough counter.

3.  A real Christmas tree - http://www.greenvalleychristmastrees.com/6-5-to-7-ft-Fraser-Fir-Christmas-Tree-p/fft657f.htm

Who wouldn't want one?! Of course I'd have to get a stand.

4.  Charms for my charm bracelet - https://www.etsy.com/listing/193940519/sweet-home-alabama-necklace-rustic?ref=favs_view_6https://www.etsy.com/listing/194247806/southern-belle-necklace-shabby-chic?ref=favs_view_5https://www.etsy.com/listing/150244112/alabama-pendant-alabama-necklace-state?ref=favs_view_7.

5. To go home. 

6.  A real Christmas dinner. 

7.  To be able to turn on the heat in the coldest days ahead. When your choice is food, medication or heat, guess which ones get cut.

It is always fun to make a list of wishes. Of course they are just that - wishes. If you ever give up on them, what a dark place it would be. 

Hope your wishes all come true this Christmas.

Being Thankful!

Last week I wore a pair of shoes that apparently were not good for my feet. My right foot has been swollen for seven days now. I could  not put a shoe on until Monday night and then barely squeezed into it. I finally remembered what my best friend told me, "Ice then hot."

So last night I soaked my foot in scalding hot water after putting ice on it most of the day. This morning I could walk better! I was so very thankful! Looks like I'll be going up to a size 8 wide.

I am amazed at how many things we take for granted until we lose them. With each permanent loss we suffer a grief. I lost my health many years ago. Grief. I lost my parents and only sibling many years ago. Grief you only learn to live with as each day passes. I lost my physical ability to work a few years ago. Grief again. 

Since lupus (plus its additions) have taken so much life and ability from me, I've learned to take each day one at a time and appreciate the things I can do like stand in the shower, wash dishes, etc., things  most people take for granted. Today I was so thankful to be able to stand on my right foot with less inflammation. 

During the holiday season people tend to remember what they are thankful for. Just because my "thankful things" are different than yours, it doesn't make it any less important. The one thing that truly hurts is when someone remarks about the loss of my family. I always want to say this, "Tell me how to feel when you walk in my shoes." 

People are way to free to give advice whether we want it or not. I tend to shut my mouth and not say things to them because I wouldn't want someone to treat me that way. When they do and really leave a scar, it takes a while for me to heal from the damage and remember I'm not a bad person. No one needs someone standing in judgement over them all of the time. "Do unto others as you would have them do unto you." Luke 6:31. What a better world this would be if everyone practiced what Luke had to say.

For today I am thankful to be able to stand on my foot and to actually put on a shoe again. 


Friday, November 28, 2014

UPDate

Just wanted to say how thankful I am to have friends who support me. Benlysta has been a rough medication to tolerate. It will take awhile to get it out of my system. I, too, wish it had worked.
Wouldn't it be wonderful if medications were money back guarantee?! Maybe they should include that in the health care system! Unfortunately, they are not so I will be paying back approximately $2,000.00.

There is always a reason for everything in our lives. Through this experience I have been reminded how kind and loving people can be. Thank you.

My next "adventure" will start in January when I see a pulmonologist. I haven't been breathing well over the past couple of years and signs are showing up that concern my rheumatologist. She's looking for pulmonary hypertension - Increased pressures within the blood vessels in the lungs that can lead to difficulty breathing and right-sided heart failure. Seems to also be a symptom of lupus damage.

After that I will have a heart cath of the right side of my heart. Date not set yet.

Thank you all again for the love and support you have given to me. Christmas season has started so enjoy your time with family!

Wednesday, November 12, 2014

UPDate on Medical Stuff

I saw my doctor yesterday. She determined that the Benlysta was making me sicker than not taking the medication at all. For two weeks out of four, I'm in bed sick and weak. The other two weeks are spent with the same lupus complications. She stopped it cold.

She said I was having a lupus flare and Fibromyalgia flare all in one. She also is concerned about my lungs and the right side of my heart. I have to see another pulmonologist and then have a right heart catheterization ( pulmonary artery catheterization ). It appears to her that lupus has damaged my lungs and heart.

http://www.thoracic.org/clinical/critical-care/patient-information/icu-devices-and-procedures/right-heart-catheterization.php



Will keep you updated when these events occur. I have always experienced strong side effects with every medication I've taken over the years. I usually rejoice when one medication is gone. But this time I lost one and added two - two more complications and a heart cath. At least it won't be unfamiliar territory. I've had one in the past (on the left side). Hoping they can take a look at the aneurysm while they are in there!

So the bills for Benlysta are coming in and now I'll have more medical bills to come. Is it worth it? Today I really don't know if it is.

All I can say is I'm taking one day at a time. Thank you, friends, for helping me and encouraging me. You'll never know how much this means!

Friday, November 7, 2014

Dreams and Nightmares

The colder it gets, the more I'm inside. Problem is the inside is colder than the outside! So I curl up in bed with an electric blanket. Rascal curls up with me. Poor dear is frozen, too. Just hope the blanket lasts another winter. 

I don't know if it is the weather, my lupus flares, or the approaching holidays, but I seem to be having dreams about my family members who have all passed on. Last night I spoke to my mother, my daddy (who was preparing his fishing poles for a fishing trip), and my brother who had been kidnapped and I couldn't find him. Please keep in mind these people have died. And then Kevin Spacey somehow appears at the end of the dreams "saving me" from their loss.

But at this time of year, Thanksgiving and Christmas, I miss them so much more. It weighs so heavily on my heart that I find myself heart sick. The heart sickness starts new flares. The circle never seems to end.

 Last Christmas was the worst I had experienced since I lost my family. I was alone. Completely alone. It was devastating. I just prayed and begged God to not let me suffer through another Christmas alone. As the holidays approach, I am alone again. 

So I "toughened up" and made the decision not to hope for anything this year. I'd been doing quite well until the dreams and nightmares started and I realized I didn't have any control over them. I wake up crying "help me!" and just plain soaked in tears. I have done away with naps (even though I am suppose to take them to prevent flares) and sleep less at night. 

At this point I wouldn't mind a good coma if it would last past January 1st. 

I have come to realize people don't care if I am alone or suffering. They are far too busy with their own lives. So I have to be thankful for the small things I can do for myself to keep going. 

No matter what people say about loss in your life, you never get over it. You merely learn to live with it as days pass. But at the holidays loss is magnified. Unless you have suffered through it, you won't understand. I believe that when a family member passes, they take a part of you with them. If that is the case, I'm only 1/4th  here. 

And if I'm only 1/4th here, why does it hurt 100%?

Sunday, November 2, 2014

A Rough Weekend!

It has been a rough weekend. When the cold rain and sleet set in on Friday, it hit my joints. I could not walk on my right leg. The knee joint was swollen twice its size. Snow set in early Saturday morning. Thankful I could drag myself to the window to see it fall. 

I love and hate winter all the same. LOVE snow! Love the cooler temps, but my body is in so much pain I can barely walk a few steps. My apartment is freezing cold and the cold affects lupus. Will I make it through another cold winter? As long as I'm bed bound, I'm okay. But walking through the apartment is so rough on my body. 

Can't believe Thanksgiving is in a few weeks. I hate this time of year. Reminds me of how alone I truly am in this world. Loss of my family is great. No one to share the holidays with - just me and the cats. I hear people complain because they aren't married - "I'm so alone." Quite frankly it makes me sick to my stomach because the very people who say this have parents and siblings. They are not alone. Alone is having no one. Unfortunately I know alone all too well.

I tried sleeping through Christmas last year, but the pain was still great in my heart. I wonder sometimes what I did to be left alone in the world. The only thing I can think of is I became chronically ill with a disease most people don't understand. It wasn't my choice. I did nothing to acquire this disease, but I have it all the same. Just wish people understood how alone I am.

If you are reading this page, please look around your neighborhood. You'll find someone who is alone in the world. Invite them to dinner for Thanksgiving and Christmas. Show you care. It will make a huge difference. Put yourself in their shoes and understand.

My wrist is so swollen today from the cold that I have to close this post.

Thursday, October 30, 2014

Lupus, Stress and Kevin Spacey

It has been one of those days - a terribly, horrible, no good very bad day! The stress of worrying where the $4,000.00 to repay a grant I received for Benlysta is keeping me awake at nights. Not to mention I'm still paying for the medication itself (the infusion). 

Side effects from this horrible medicine have been strong. This month I had a horrible headache the day after, joints swollen, pain intensified, and could not get out of bed for a week. Geesh!! If the medication doesn't kill me, the worry will! I haven't slept for two days.

Stress is very bad for lupus patients. It causes flares. Flares cause irreparable damage. Damage makes for a terrible life. No quality at all. 

And that's where I am right now. Stressing over the cost of everything. Knowing I can't pay it back alone. Knowing I have no one to turn to for help. 

My pantry is empty. My fridge is bare. The cats are getting low on food. And I'm ready to pull my hair out!

This has been a very difficult month. Now the holidays are approaching. Another stress added to my life. No family. Nowhere to go for the holidays. Magnified emptiness. 

I'm tired of being sick. I'm tired of being tired. And I'm tired of struggling. Stress is killing me. 
 
 One good thing happened this week. I received a card in the mail from Kevin Spacey. He was thanking me for kindness. I have no idea what he's talking about, but it made my day.

Wednesday, October 15, 2014

Word Of Warning

My apartment is old. The bathtub has horrible stains. I have tried for two and a half years to get those stains out. Yes I' e tried everything! 

Tonight I decided to try a product with Clorox. Burned my lungs and throat so badly. Almost called 911 when I passed out after a severe coughing fit. What stopped me? Cost!!

Fumes are still bad, but I finally opened the window.

If you have a chronic illness, do not use any thing with Clorox.

And no it did not clean the horrible stains. Just made me sick.


Saturday, October 4, 2014

Update

It has been a horrible week physically! Was so sick I could barely get out of bed. High fevers, swollen joints and legs, throwing up, etc. Side effects from Benlysta or the start of a new flare? Not sure. All I know is that it has been a horrible week. 

Haven't sent many updates lately because I'm using my Kindle to go online. Hard to type on a kindle. Will try to do better.

My next Benlysta IV is Friday, Oct. 17th. The foundation that has contributed part of the payments for treatment (since my insurance won't cover it) has informed us we must pay back 25% of the full cost. Fine time to learn of this! My GoFundMe.com account is dead in the water. I haven't met $1,000 let alone $13,000 to pay for the medication. 

Many prayers needed!!

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 gofundme.com 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 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 gofundme.com 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 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."








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!



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!