I’m STILL the Same Susie…Clueless

Whoops
Whoops

Earlier this year the National Lupus Foundation had Lupus month as well as many different Lupus organizations had great campaigns to bring awareness of Lupus to the public.
One such campaign was the #LHandSign for Lupus. All of us and our supporters raise our hand & make the “L” sign with our HAND & take our photo to share in solidarity.

Continue reading I’m STILL the Same Susie…Clueless

The Good Things About Lupus (a Fiction story of course)

I realize all I do is complain about Lupus SLE. HOW boring. I mean, if I was to pay attention to all those beautiful quotes I post on Facebook, I wouldn’t be such a Negative Nellie. But I am. So, I decided to attempt to write down the positives, if any, of having Lupus. It looks like the main PLUS to having Lupus SLE is “it’s my excuse for everything whether it’s true or not”
1. I forgot to pay the cell bill – Cause: Lupus brain fog
2. I dropped my sister’s favorite porcelain vase – Cause: Lupus arthritis
3. I was STILL in my pajamas, hair sticking up, barefooted when Fed Ex delivered a package at 3pm which required my signature Cause: Lupus I didn’t get any sleep night before & I’m experiencing horrible fatigue.
4. There are NO clean socks. Cause: Lupus I forgot to put the wet clothes in dryer. For two days. Now I need to wash again to get mildew smell out.
6. I forgot your birthday. And I was the person who volunteered to put on the party. Cause: Lupus It slipped my mind due to brain fog.
7. I skipped the number “5” in this list. Cause: Lupus I lost my place.
8. I took my new fishing pole & broke it on purpose by hitting it repeatedly on side of raft. Cause: Lupus I had a mood swing because I didn’t catch a fish.
9. I ran out of gas, literally. My car ran out of gas. Cause: Lupus I am just so fatigued & in pain I didn’t notice gauge on empty.
That’s all I can think of right now. Cause: Lupus I can’t remember anymore.

Support of a Husband…

I am fortunate to have the understanding & support of my husband, Bryce. Who drives me crazy sometimes but it a good way. 💜

Bryce & I at Crater Lake
Bryce & I at Crater Lake

 

Bryce & I at Crater Lake
Bryce & I at Crater Lake

Which Came First? The Lupus Chicken or the Egg?

For those of you that have been diagnosed with Lupus or Lupus SLE, I’m sure you’ve wondered how did I “get it”? Where did “it” come from? What caused “it”? How did all these separate symptoms get diagnosed as separate maladies only one day to become the conclusion of an observant doctor…..Lupus ?
Continue reading Which Came First? The Lupus Chicken or the Egg?

Lupus, Stress, Weight, etc. etc.

Ok, I’m a skinny person naturally. Always have been this little skinny person. That hasn’t stopped people through the years saying the following to me:
Have you lost weight?!
You need to put some weight on girlllll! You’re too skinny
Are you ill? Because it looks like you’ve lost MORE weight.
You looked better when you have more weight on you Continue reading Lupus, Stress, Weight, etc. etc.

A Word or 100 About Lupus & Family

FRIENDS
FRIENDS

Ok, Do I care what people say or think? YES!
Lupus SLE obviously affects my friends & family. I can’t make plans for lunch, or trips or babysitting, tennis, walks on the beach or pottery classes.
This, in some people, causes resentment I’ve learned. Resentment towards me. I “used” to feel horribly guilty, bad, sorry however I’ve recently realized that there are those who say, “hey! Don’t say that! Don’t be sorry, just know we can raincheck it for a better day. Don’t you dare feel bad” and then you have those who say, “well, I can’t depend on you or I can’t count on you. This causes me problems & I have to make different plans”. OK, I figure if you care about me enough to learn about lupus SLE, REALLY learn about it, then you’d understand I am unable, physically, NOT mentally, physically unable to commit to anything when my lupus is “active”
On the MendSo WHY would you say something that is hurtful? Because you either haven’t accepted & dealt with the reality that I DO INDEED have this disease or, you are resentful because I’m not the person I once was. Either way, personally I have to say it hurts my feelings (whaaaa again) and is unacceptable to say to me. 😡
I don’t hang onto anger, I just realize I can’t listen to these folks. Instead positive people who cut me slack. Because it was years of people pleasing that blocked my body’s ability to fight Lupus. Besides that nasty autoimmune system that has dyslexia.
Meaning…. my immune system attacks me.
See, I don’t look sick most times. Sometimes I’m able to suddenly DO SOMETHING! I hurry up & live all the life I can in that day, or hour. So, people might see me going somewhere or getting out of the house & take it personally. Why can she SO THAT but couldn’t go to lunch with me last week??!! Again, learn about SLE. You’ll understand why.
Be nice. I’m trying.

 

Lupus & Achalasia, words that sound cool but aren’t

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