Friday, June 26, 2015

Feeling Lonely

The harsh storm woke me up at 3:00 a.m. and I never was able to go back to sleep. When I walked outside to feed Buddy, I found the air to be in the mid 60's. It actually felt good outside.

My college is having their 125 year reunion this weekend. I wanted to go because I wanted to see two people on the coming list. So I pushed myself out the door walking very slowly. It took me an hour to walk a mile and a half. I checked in at the library and went to the Student center to recover from my walk. I have a very bad back. When I stand longer than five minutes, my thighs go numb. Lupus has already caused nerve damage in both feet and legs up to my knees. I can no longer feel them and have to balance carefully just to walk.

There was an hour left before the gathering in Hughes auditorium for chapel so I made it down to the bookstore to look around. I finally decided to eat breakfast in the cafeteria before it closed. It was the first good meal I've had in two weeks. It made me feel so much better.

I sat in chapel remembering what it was like for me as a student. Some of the most wonderful memories I have of Asbury came from chapel. Today's chapel was no disappointment. There is nothing like hearing singing in that wonderful old building. The speaker was just as wonderful.

What I did experience while on campus today was an overwhelming sense of loneliness. People were talking to those who were in their class, hugging each other, bonding all over again. I didn't have anyone to hug or talk to. I sat quietly in the chapel seat wishing I didn't feel so all alone. It broke my heart. I never saw the two people I wanted to see. There were so many people crowded into that building.

After chapel I went to the grille to view the art show. Beautiful pieces. I sat down on one of the sofas to rest and try to recover. The clouds had dispersed and heat increased. I dreaded walking back home in full sun. Exposure always brings on a lupus flare and I could feel my system shutting down already. I put it off one more hour and decided to eat lunch in the cafeteria. I was so thankful for the full meal I received. Two meals in one day. Hoping this helps to fend off the flares for awhile.

Today was the first day I walked so far since January. By the time I walked home my back had already took the rest of the sensation out of my legs. It took longer to walk home. The sun, the heat, and the humidity all combined to make me so sick I could barely make it back. I felt so bad.

When I opened my door, I collapsed inside falling to the floor before I reached a chair. Full bruised, hurting, swollen and sick, I have decided this is the last time I push myself.

People don't understand how hard it is to do something as simple as walking when you're living in a body damaged by twenty years of lupus flares. I always thought it was because they couldn't relate. Now I think it is because they just don't care. A friend called me last night and we talked about the struggles I'm facing. I told her "you can't make people care."

The Bible talks about the signs of the end of times. One of them is people will become lovers of themselves. That part has definitely been fulfilled. When I took a package (medications) from the UPS driver, we talked for a few minutes. He reiterated the same sentiment I had felt all day. If people showed more kindness and caring to others we wouldn't have a world full of mess!

I have a hard time finding a way to the doctor in Lex. There are several appointments I had to cancel because I have no one willing to stick with me even though I pay for gas. I haven't had an eye exam in two years and cannot fill one of my lupus medications until it is taken care of. I tell my rheumatologist I have no way to get there. She just repeated the same thing. Not a clue!

I haven't had an x-ray or cat scan on the aneurysm growing near my heart in two years. The last doctor who checked it was a joke. I have no thoracic surgeon.

I have a hard time getting food. For the past few months I've had to order my food from walmart.com. Of course that does not include fresh foods so I do without.

I'm suffering. I'm overwhelmed and know I should have stayed in Alabama no matter how bad the crime and how bad the people. I could access health care much easier. I could get myself to the grocery store so much easier. I not only want to go home, but need to go home for my health. The stress is killing me.

The cost of a move stops me in my tracks. I desperately need a miracle.

At this point in my life I would rather die than suffer like this. As my health declines it will be so much harder for me to travel a long distance. So the question I ponder is do I give up or not?

Saturday, June 20, 2015

Father's Day

My Daddy died in 1996. I miss him every day.

A friend shared this link on her facebook page and I thought it fit for all of us. Don't wait until it is too late to tell someone you love them. Send them flowers while they are alive. Don't weep from guilt at their funeral because you weren't there when they needed you the most. Do it now.

Daddy - Miss you so much!!




https://www.youtube.com/watch?v=2UWx-shGM0g


Thursday, June 18, 2015

Hot Hot Summer!

It has been terribly hot lately even though Summer has not officially started. Now the rains are coming in from Tropical Storm Bill and bringing hail with them. I've spent days preparing for a yard sale on Saturday, but it appears that heavy rains are headed for us. It has been difficult just to get ready for this sale with heat and rain affecting my health. If I can or cannot do this sale, it will officially be my last one. I just can't physically do this anymore.

Through fevers, chills, swollen joints and severe pain, I've muddled through. Some people don't understand how heat, cold, rain (barometric pressures and humidity) can cause lupus flares. Quite frankly I get tired of explaining it over and over again.

I do my best to remember what a friend shares. I love them enough to listen, care and remember. I'm finding myself having to repeat so much to those whom I am close to. It is frustrating. I know people are so consumed by their own worlds that they simply don't remember. I have to remind myself I am a different bird - a square peg in a round hole. I care deeply, feel deeply, hurt deeply. I'm super sensitive. It has its faults as much as benefits.

I've had a continual dream that has occurred over the past few years. Never know when the next installment of the story will come, but it always stars one special person who cares about me, makes a difference, comes to my rescue. I've never understood why he stars in my dreams, but I can say they make me smile. I had another installment late this morning. He rescued me once more. I knight in shining armor. Even though I know these are simply dreams and won't come true, I find them to be a gift from God in that they bring such joy for a short period of time.

I'm sick today. A flare that started last week with fevers has reached its peak. The pain is bad. The swelling is worse. The headaches are debilitating.  The heat is the culprit here. Sometimes I wish others knew just how hard it is to deal with living with this horrible disease alone.

It has been a hard year so far. I've been unable to get to the necessary doctor appointments, feel overwhelmed with dealing with it all, been sick from medications and flares. I simply suffer through each day and pray tomorrow holds relief.

If you suffer from this disease, you know by now it branches out to other extreme illnesses causing life to be difficult. I've stopped socializing because I simply can't function. Thank God for feline friends. They've been more faithful, loving and dedicated that any person I know. Even though I don't go out much anymore, except for doctors, I've learned to be content alone. It has been a hard lesson to learn over the years of my life. But I've finally reached contentment. I enjoy being around people, but I'm finding it more difficult to be labeled, judged, and having to be a teacher about my heath. It is far more comforting for me to just stop. Have I given up? To some degree I have. Maybe now I can rest in the day to day. After all, we can't live tomorrow until it comes. The stress of worry, tears from fearing tomorrow, dealing with the past all come to a head causing more flares, more illness and making life more difficult to face.

UPDATE: It was pouring rain today. I tried to have my yard sale on the front porch, but became so ill I had to give up. Stuck in bed once again.



Saturday, June 13, 2015

Summer Memories

I grew up in the deep South so summer was not always my least favorite time of year. Getting out of school, riding bikes, sitting in the sunshine, cutting grass, helping my Daddy with his garden were all things I enjoyed doing. There was nothing like peeling a cucumber from the garden and enjoying every bite while I picked vegetables. We also spent a good part of the summer with a metal dish pan in our laps shelling peas and butter beans - my least favorite thing to do. Now I'd give anything to have some of those wonderful fresh vegetables.

Then I was diagnosed with lupus. The sun became my enemy. It caused a great deal of damage before I knew what was going on. Small town doctors didn't know what was going on. They only knew I was covered in red rashes, ran high fevers, and was sick most of the time. So I suffered on and kept going. It wasn't until the extreme stress of caring for my dad and brother while working full time and losing them both to death that pushed it all to the surface. I had been diagnosed by another doctor a couple of years before then, but he said, "we won't worry about it now." And he didn't. I didn't know any better at that time.

Sad part is my body had already acquired a great deal of damage, irreparable damage, due to lack of diagnosis and treatment. I almost died a couple of times, spent many years in and out of the hospital and ER, and went through countless medications that did more damage. The stress of dealing with all this alone made it worse. It still does. Unlike my mother, whom I took care of for years, and my father, whom I took care of for years, and my only brother whom I took care of for a year before he died from cancer, I don't have a caregiver. I don't have a support system. I have very few friends. It amazed me the most when all those wonderful friends I had suddenly disappeared when I became so sick. I'm not alone in that experience. I hear it from others who suffer from this disease all of the time. The best I can hope for is not to die alone and if I do, I hope someone finds me.

Summer memories were not so bad growing up. Fresh vegetables were the best part. My Daddy grew a big garden in our backyard. There was always fresh peas, tomatoes, watermelons,  cucumbers, even lettuce for me (which he called rabbit food). I miss those times.

What I wouldn't give for a fresh tomato sandwich, a slice of watermelon, fresh peas and cucumbers today. But there is no bread, tomatoes, or fresh vegetables in my home.  With my low income being squeezed to the maximum due to medication and medical costs, I am left to survive on very little food, none of which is fresh. I still crave a big red juicy apple with that tomato sandwich.

A while ago I searched around the pantry to find something good. Instead I found canned vegetables that had been in there for a few years. Expired? Yes. Will I keep them? Yes. I may need them to survive.

With most people going out to eat a great deal of time, no thought is given to ones who have to count every single penny. I guess you truly don't appreciate what you have until it is gone. That goes for family, friends, good doctors, people who care and food.

I'd be more than happy to sit with a metal dish pan in my lap right now shelling peas and butter beans. My mother would be so pleased to hear this.

Still striving to move back to the deep South. At least I can get help when I need it, food, be close to the hospital. But it takes every penny just to keep body and soul together. So thankful for my friend who sends me cat food. So thankful they don't suffer. I've learned many lessons by moving to KY. People are the same no matter where you go. Most are so consumed with their own families they can't or won't step out beyond that comfort zone to help. I believe if I stood on my porch and screamed "HELP!!!" the only thing that would happen would be a visit from the local police to put me in the mental health ward. I've accepted the fact I won't have a family or be a part of one.

I have accepted the fact that I can no longer walk to the store to buy groceries. The weather, damage to my body, damage to my back and inability to balance on numb and useless feet and legs make it hard just to walk a block.

Every day I ask God to provide the funds I need to move home, a place to live and the physical strength to make it. As each day passes, I lose some more strength, a little more hope, and give up a little bit more.

The heat is wreaking havoc on my body. It is as if this horrible disease is magnified from it. Even though the heat is worse in AL, I know the help is there, the help I need to make it day to day. What a bad choice I made to move. There was so much hope.

  

This Is Me

Friday, June 12, 2015

The Heat Is Back!

To say the least, it is NOT cold in Wilmore, KY! The heat has returned full force. Of course, the wave of heat is coming from the deep south so I shouldn't be too surprised.

I always said I liked Winter best because you can always put on more clothing to get warm, but you can't do much to stop sweating. Here Winter and Summer run neck in neck as far as suffering goes. It is too cold to function in my block wall apartment during the winter and too hot to do much else when the heat sets in. I don't know if block walls hold in the heat and the cold, but these walls seem to do so.

I knew when the heat increased and the humidity started to rise I'd be back to fighting flares. This has been a week of miserable flares with fevers, fatigue and depression combating each other. Doesn't look like the heat is going to let up any time soon.

City-wide yard sale is next weekend and I'm hoping I can physically participate. There are boxes in my living room with stuff ready to be tagged. The closer it gets, the more I'll know.

I'm running on empty this week.

For those who suffer from this horrible disease or care for someone who does, here's a new link for you:

http://www.lupus.org/pages/unveil-survey


Wednesday, June 10, 2015

So Tired of Being Sick!!

On Sunday night I broke out in a very high fever of 103 degrees. It was an odd feeling as though I had left my body with every move I made. When it finally broke, I had sweated so badly that I soaked the sheets all the way through. Repeat on Monday and Monday night. I've been so weak from whatever this is.

Had I been in AL, I would have gone to the ER and spent time in the hospital. Yes, it has happened in the past. Here when I tell my doctors of this experience, they don't seem to care much. So I just suffer it out.

Rascal must have felt my suffering for he lay in my lap most of the day yesterday and when I went to bed last night, he slept on my pillow with his paws wrapped around my head. He stayed there for hours before I broke out into another high fever. I had to sit up after that one. It hurt so badly that I cried for hours.

Someone shared with me about a family member not wanting to be alone so she is moving back home. Thing is she's not alone. She's married with a child.

I find myself with very little patience for someone who says they are alone when they're not. No patience with someone who has a family member to run to when they need money. I ate ramen noodles for two weeks last month because the month had five weeks and most of my money went to medications. I just suffered it out.

I wish I had a family member I could run to, but mine are dead. I am alone. And it is horrible. I find the more ill I become, the more alone I am.

I worked in two church offices in my lifetime. I learned things members would lose their faith over. One of the lessons I learned as a healthy hard working person was the more you could do for the church, the more welcome you were. If you were unable to fill a working position or a financial position, no one was interested.

I learned where my faith truly lied during those years and people were not it. I'm so thankful God isn't like the people who "run" the church. I am so thankful my faith is in Him and not them. If it were in them, I'd be lost for sure.

Sickness comes at inopportune moments. A week from Saturday is the city-wide yard sale and I need the money. But I've been too sick to prepare for it. With the heat increasing I just hope I can endure a yard sale. Still need funds to finish paying off the failed benlysta treatments from last summer. Want desperately to get rid of "stuff" in general. Need money just to move back to AL where I can get to the hospital or doctor when I need to do so and where I can get help when I am unable to care for myself. This yard sale is a need.

Weather extremes are hard on my body. Extreme cold, extreme heat and humidity, rain, swings in temperature. They all put me in bed from flares. It isn't what I call living.

Someone suggested I take a supplement to get more strength. Tried those in the past and they didn't work. I also don't have the money to pay for medications, every day bills and food and add a supplement to the list. People mean well. They just don't understand how much damage this disease along with other illnesses have done to my body.

I've been on two sets of antibiotics the past two months. One was for a bad tooth infection that spread to my ear, lymph nodes and down my neck. The second one was for a MRSA virus. With all those antibiotics you'd think there would be no infections left.

I'm tired of being sick. I'm tired. I long to be able to go home....the home I grew up in where my family lived. Feel that "ahhhh" moment when I walk in the door. Be able to sick in the swing at night and look at the star studded sky for hours. You never know how wonderful home is until it is gone.
You never know how wonderful your family is,  even though they may have been tough to live with, until they are gone.

I just want to go home, but since I can't go back to the home where I grew up, I want to go back home where lifetime friends are still there. I don't want to die here alone.

Back to bed - another fever is coming on.

Thursday, June 4, 2015

No Wonder!

Today a facebook friend posted a comment about suicide and the rest of her friends said they believed suicide increased because of the way parents always reward their children if they succeed or not.

I personally think it is because people don't care about each other anymore. No one wants to sit and listen to you when you're hurting. Yet they are so eager to talk your ear off about their lives and what they did this week. They also offer unsolicited advice. Personally if I want advice, I'll ask for it. Otherwise don't tell me what to do. I'm 54 years old and I didn't reach this age by not making my own decisions.

Most people just tell others to go to a counselor. I know someone who makes a bee line to a counselor every time she/he has a minor problem and can't handle it. Keeps them in money.

Funny thing is Jesus never said, "Get thee to a counselor!" He said to love one another and I believe that means to care enough to listen, to show compassion, to do something to make a difference in someone's life who is hurting. It is so easy to balance on that suicide line when you're alone and feel like no one cares about you.

No wonder the suicide rate has increased over the years. People have no one to go to unless they can dish out money to a counselor. What has happened to this world?!

I personally believe it is a greater sin to know there is a need and do nothing about it. That includes loving someone who is hurting. This past weekend I had a dear friend love and care about me. She was worried because I had very little food in my apartment to get me through to the 3rd. She did something about it and it made all the difference in the world. Not only did it fill a need, but it reminded me there is one person on this earth who thinks I'm worth it, that I have value of some kind. She still believes in the good in people. I've had to wrap a wall around me where people are concerned. It beats getting bullied, belittled, and ignored. She has hope and I experience disappointment. I'm glad she's not like other people.

We all need to feel loved. Some of us don't have daily encouragement and love. Tomorrow go out and listen instead of talk, love instead of avoid, and make a difference in one life. You may be the only one who does so in that person's life

Monday, June 1, 2015

Red Apples

I was told growing up what you craved your body needed. I've been craving big red juicy apples. I dreamed someone left a big bag of red apples on the table on my front porch. Sad indeed when I realized it was just a dream.

The weather has dropped to the 60s again and the rain has brought more pain my way. It is still difficult to walk a block much less several to the grocery store. I'll just have to dream about those big red juicy apples for now.