RIP Auntie

credit: Morguefiles

How much can one person take? I lost my aunt who has lupus to a massive stroke last month. She didn’t talk much about the lupus, but she did go on with her life. She was an ideal patient in my mind since she continued to work even though she struggled daily with the lupus. She had several stokers before a stroke took her.  I admire her ability to not let lupus bring her down.   She worked until she died. Rest in Peace Auntie.  You are forever in my heart. I pray one day a cure will be found for lupus.

Lupus is My Life Poem

Living with lupus is full of ups and downs.

I’ve learned their are two ways to look at it.

Good and Bad……

I’d love to say that it’s easy…..

But it’s not………

Each day is a battle to think positive…..

I still have my negative days, but I refuse to give in…..

I still spend hours or days on the sofa dealing with lupus and fibromyalgia…

But I have more control over things…..

I’m more aware of what’s going on inside…..

I’m better prepared for lupus’ ups and downs…..

So I’m ready for the good and bad days……

Lupus may be my life, but it’s only part of my life….

Not running my life anymore……..

How is your life with lupus or fibromyaliga doing??

I’m back I think

I’ve been neglecting this blog for a while truthfully. Its not that I don’t still live with lupus and fibromyalgia. I just haven’t felt like writing over here, but I’m getting back to posting regularly over here. I’ve been busy with a lot of things. My daughter has gone back to public school which has taken a lot of pressure of me. I have been trying to keep myself busy with other things. I’ve been sewing some when I’m feeling up to it. Our kitchen table has been the permanent place for my sewing machine. I’ve done some experiments with creating. It’s helped me deal with my illness better and it makes me feel like I’ve finished something. I’m working on improving my writing stories. We’ve had more appointments than normal lately. My partner was in the hospital for a while which wasn’t an easy thing to go through being sick myself. Our dogs have been doing well. Both had a birthday over the summer so they’re 8 and 10.

Here’s some good links for lupus:
talkinglupus.com

lupus.org

I can’t fit my jeans

The Spirit of a Butterfly

I do believe in butterflies.
They have such a free spirit.
Traveling from one place to another.
I love the sight of them.
They help me imagine a life without lupus.
I pray to God each day to take the it away
Somedays I can see the gifts lupus gave me.
But other days I cannot see any of them.
The freedom of a butterfly is something I admire.
They are admired by many and help the world go around.
Seeing them reminds me to see the beauty of things.
The earth, the sky, the snow and the cloud.
They are all gifts from God and things I admire.

Lupus has Changed my Life Forever

I was once a physically strong woman.

It was gradually taken away from me.

Lupus has changed my life forever.

I once cared for others.

Now I have to accept help from others.

Lupus changed my life forever.

This is not the life I signed up for.

I once had dreams of many.

Lupus has changed my life forever.

Now, I just have to make it through the day.

I live with pain each day.

Lupus changed my life forever.

My family suffers with me.

They did not sign up for this either.

Lupus changed my life forever.

People say I don’t look sick.

I ask you ” What does sick look like?”

Lupus changed my life forever.

You say you understand, but you can’t unless you’ve lived with it.

You may understand if your family or friend is affected.

Lupus changed my life forever

What was once my life is now my life with lupus

Along the way lupus has taught me many things.

I’ve learned to appreciate the small things

To appreciate the good days, even if its just a simple smile.

Lupus changed my life forever.

I would not wish this disease on anyone no matter how cruel or evil they are.

Even my dogs are affected by lupus.

So you can’t ever say that animals don’t have compassion, because mine do.

Lupus changed my life forever.

They know when I flare and it shows.

You say I’m too young to be sick.

But lupus doesn’t care.

Lupus changed my life forever.

It tears famlies apart bit by bit.

My life has changed forever because of lupus.

I’ve learned to appreciate the simple things in life.

Lupus changed my life forever.

Lupus Rant with a Bit of Fatigue

Today, I’ve felt pretty crappy and it just happened to be my daughters first day of 9th grade. I felt really exhausted today. I wanted to go back to bed and start my day over again, but that’s easier said then done when your the teacher. I chose to home school her because the schools pretty bad. I don’t feel as bad right now, but then again I’m living with the heating pad. That may change five minutes from now, you know ? Sometimes I find myself wanting to eat and eat just to get a little  bit of energy. If you live with fatigue, lupus, or any other chronic illness you know exactly what I mean. I can only hope I feel a  lot better tomorrow. The transition over to winter is always difficult to me. I’ve wondered why this seems to be. I have issues changing over to most seasons. Sometimes I feel more like a weather transmitter then human, whatever that means. I know I know I’m blabbing on.

Sometimes its hard living with all this craziness. It seems to me that some how I’ve been given this card, but I can’t give it back. Yeah, I’m ranting and that’s just what I feel like doing. Its my blog and I’ll rant if I want too.. LOL Hope everyone else is feeling better, that might actually make up for how bad I feel. Thanks for reading all.

Question: Does anyone elese have issues with changing over the seasons or is it just me?

A lupies life is full doing too much !

Today was busy for me. Now I am paying for it by feeling like I’ve been hit by a mack truck that came strolling by in all its glory. I hate when I feel this way. I’ll probably be nursing my ouch’s for the next few days. You know us lupies know just how  to overdue things. I hope it don’t last long. I’m not looking forward to the transition into fall this year because I have gone into major flares since my life with lupus and its side dishes. Ya I know its a small entry for me, but I felt inclined to share with you all.