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Wednesday, July 29, 2015

Yucky!!

Weather can be such a horrible punishment for someone who is chronically ill. The humidity is high. The rain is present. The heat is miserable.

I am swollen. I am sick physically. I don't have a choice but to keep trying.

On days like this I miss my family terribly. Lost my mom when I was 24. Lost my only brother when I was 33. Lost my dad when I was 35. Was alone in the world from then on.

My dad became a tender hearted caregiver after my brother died and when I was diagnosed with systemic lupus. If I were home sick in bed, he would check on me constantly and made sure I had food. Not something my mother ever did when I was growing up.

Now there is no one to help when I can't get out of bed. As much as I love Rascal and Bitty, they are useless when I'm sick!

Our society has become an uncaring place. There was a time when neighbors checked on neighbors especially when they knew the person was sick. Not my experience. Wish they cared more.

I haven't seen another person since last Thursday. Not by my choice. I'm imprisoned inside my place during the most extreme temperatures. No sun exposure. Heat and humidity beating me up regardless.

What use to be something I look forward to has changed to "junk mail again!" It is bad enough to have an email account with no personal notes, just junk mail. Whatever happened to sending someone a card or a written note?? Has that art been lost forever? I make it a point to send a real birthday card when I know of someone's birthday.

As I sit here propped up on pillows with a laptop in my lap, I am miserable. Totally miserable!

Oh to experience hope once again!

Saturday, July 25, 2015

Happy Birthday!

Happy Birthday to Kevin Spacey. I'll always remember the kindness you shared with me.


Wednesday, July 22, 2015

Broken Heart

When I was first diagnosed with systemic lupus I lost a lot of friends. Seems no one wants to be put in any position to help someone who is sick. Before you pass judgement on what I just said, walk in my shoes for a week and then I'll listen.

You'd think I'd get use to losing friends from illness. But I don't. This weekend was no different.

A group of college friends, whom I was very close to in college, gathered in KY this past weekend. Even though I'd probably not see any of them, I had hope. No phone calls, no emails, no nothing. They gathered, did their thing and went back home. I sat alone at home still hoping.

It broke my heart when I finally realized the same people whom I loved dearly, who I thought would be in my life until the end, decided I wasn't worth the effort or time. Apparently I would "slow them down."

I've always said don't show up when I die if you can't show up while I'm alive. My mother said the same thing. I thought she was so wrong. People did care. But she refused to believe.

Turns out she was right. If you ever want to run off a bunch of friends, tell them you are sick, your life has changed, you don't have any family, and you will live with this chronic illness for the rest of your life. Those statements will clean house for you.

Some people say they care, but actions don't back it up. I'm a firm believer in actions speak louder than words. Don't promise someone something and not back it up. Don't turn away because you don't understand. Just care and let your actions back up how you feel.

It will mean the world to someone suffering in silence.

A Sore Recovery!

As I stepped out of the shower on Saturday, I fell hitting myself in the head and falling onto the toilet. Broke the arms that hold the seat on. Bruises galore. Just loss my balance and my knees buckled.

It is hard to maneuver when you have permanent nerve damage in both feet and legs due to systemic lupus. Do you know how it feels when your feet "go to sleep"? That's how my legs feel from the knees down all of the time. Imagine having to stand sturdy or walk across a room on legs like those!

So at times I lose my balance and hit the floor. I learned how to change a toilet seat from this experience. There was no one else around to do it.

Another thing about dealing with chronic illness(es) is having to do it all by yourself. No one to do little things for you. No one to call for help when you can't get up from a fall. Instead you just keep on trying to get up even if it takes an hour.

It has been difficult to pull myself up from a lying down position.

If I ever gave up, I'd die on the floor. I guess I won't give up today.

Friday, July 17, 2015

Just A Reminder

You never know what tomorrow holds so visit that friend today. If you can't visit, send them flowers or a card. 




Good Grief What a Fall!!

When I stepped out of the shower this morning, I fell, hit the toilet seat and broke the back off. Thankfully the seat is still usable. I'm more concerned with the soreness and bruising from the fall. It took awhile for me to stand up again, but I finally did. The good thing is I didn't mind the cold bathroom floor this time around. In Winter it is brutal!

I haven't been out of the house since last Friday. Haven't seen another person since then either. This is my life. I've learned to become content alone. 

Many people ask what I do with myself all day since I can no longer work. If they had a chronic illness, they wouldn't have to answer this question. They would know it takes every ounce of strength just to accomplish the smallest task. Just putting on clothes is a chore sometimes. Most days I don't bother. I save the strength for things that must be done like showering, making dinner, or cleaning when I can. 

During times of extreme weather, whether summer heat or winter snow/cold, I'm stuck in bed. Weather changes are bad on people with systemic lupus. We're a walking barometer. Every rise in temperature, barometric pressure, humidity level, cold temperatures, etc. cause a great deal of swelling and pain. 

Needless to say, I'll be spending a few days in bed after this morning's fall. It feels as though I've been run over by a truck. Didn't take long to stiffen up. The hard part is trying to get up after a fall. The pain is worse. And there is no one here to help me. No one to care for me. No one. 

How I miss my family at times like this. My mother wasn't much for being a compassionate caregiver. She just pushed me to go on. My dad wasn't either when I was growing up. I guess that's why I'm so shocked on the rare occasion when someone does a kindness towards me. I never had kindness or compassion growing up. My dad was better at checking in on me when I was older. He became more compassionate. 

Seems like a lifetime ago I was a full time caregiver for my mom, dad and brother while working a full time job. The memories are still vivid, but if I reach back to remember, my heart breaks. Their losses feel like yesterday. No matter what anyone says, you never get over the loss. You just learn to live with it as time goes on. 

Better head back to bed before I become so much stiffer I can't get out of this chair. 

If you can walk, be thankful. If you can do small things. Be even more thankful. Life changes on a dime!


Wednesday, July 15, 2015

What A Horrible Day!!

Normally I am thankful just to open my eyes in the morning. But today I awoke with so much pain! All I wanted to do was unzip my body and crawl out! There has been so much rain the past two weeks. So many people lost their homes due to flooding. 

Thankfully I live in a place that does not flood when it rains. 

With the rain setting in, the temps going up and down, and stress from day to day living, I've developed yet another lupus flare. Nothing anyone can do about it. No cure. No treatment available. Just treating the symptoms. The only active treatment I can apply is bed rest. 

I spent a great deal of winter in bed due to flares and attacks on my lungs. Now the summer brings the same fate. Just comes with the territory. 

How I wish I could travel! Just run away somewhere and drop off the face of the earth. Wouldn't change my health situation, but it would help mentally. 

When you're chained to home during extreme seasons, it gets very lonely. I haven't seen another person since last Friday. Some days it is a blessing. I think I'd make a great hermit! Other days it just adds to the stress of being chronically ill. 

At home in Dothan it is in the heat indexes of 112. Truth is here or there the temperatures would have the same effect. The difference is I'd not be alone all of the time. 

I saw a post on facebook today that said, "If I had one sunflower, I'd be happy!" 

Personally love sunflowers, but was unable to plant any this year. Too, I'd be happy with yellow roses - my favorite! 

May I ask a favor? If you are reading this post, please do this one thing for me. In every neighborhood there is at least one person who is alone and sick. They may never see another person. They have no family. Make it a point to visit them, take them some flowers or food, and realize that one day it may be you. Invest in someone who is hurting (pain or depression). Make a difference in a life today. 

It is back to bed for me. My thankful moment today is being able to take a shower. Things I use to take for granted, I cherish. How about you?