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.

 

OMG that nasty looking RASH

Nothing like a lupus rash to start your day out! The sun is NOT my friend anymore. Prednisone is…. But part of this beautiful face was courtesy of a bad bout of nausea followed by dry heaves.
You learn quickly that there’s nothing that can cover it up, no botox, no facial rejuvenation, nothing. So you just don’t go out to a picnic or in public when you look like this! It’s ok though, it doesn’t really hurt other than pride which by now is gone & you are humbled to be the person God made you.

Hospitals ROCK! Not

Hospitals Rock! Not really....
Hospitals Rock! Not really….

Well, I’m in what doctor’s call a “lupus flare” meaning my disease is active.  I’ve had two week long hospital stays in the last six months. What fun! The second hospital stay was a big surprise. I simply went to my scheduled follow up with a gastro doc, and four hours later a nurse had CALLED ME A CAB to take me to the hospital ACROSS THE STREET! They wouldn’t allow me to walk over there. Needless to say I felt pretty silly. I barely got there in time to be admitted. No one was with me, so I wandered around with a blank look and my “file” from the doctor with the admission info. I got someone’s attention, she admitted me, said I was in luck, there was ONE bed available! Yes, I felt SO LUCKY! YES! I’m in the hospital and not sure why?

I got this huge room, great view. But the TV didn’t work, the nurse call button didn’t work, the sink stopped up and whoever forgot to tell the nurses that a new patient was just admitted so I laid on the big bed, arms folded behind my head, legs crossed, staring out the window when BAM! The door swings open and a nurse arrives with stuff hanging from her like a stethoscope, tape, cell phone, glasses, name tag pushing an IV stand with a bag of something swinging back and forth. “Hello! My name is (??? I can’t remember her name) and I’ll be your nurse for ten more minutes. At 7pm there will be a staff change.” Ok, thank you for that info….why am I in here again? “Hum let me look, ok, fluids, tests, pain meds” ok, why will I need pain meds? “Because you are going to have an invasive endoscopy to see why the CT scan you had three months ago showed you esophagus and stomach had masses in them” they do? I did. OH I did not know that. Well ok then. Please don’t forget I’m here like last time. They forgot and I spent seven days eating on ice chips.”really?!! Just ice chips?! Why?” You tell me. Naw, it was because I had an acute pancreatitis attack. So I guess I couldn’t eat or drink. this is just a very small tid bit of how lupus effects your life. You become pretty independent. Because lupus SLE attacks your pancreas, kidneys, stomach, heart, brain, skin, whatever.  Please excuse my poor grammar & typing. As long as you can read the words it should be ok. I have nothing against hospitals, doctors,  nurses, etc. I just don’t like the bills that POUR in after the. Then phone calls that begin when you aren’t prompt in paying. Lupus is the gift that keeps on giving! Gift? Sort of…. :/

Let’s Start Today – Lupus and Me

Today I decided to start a blog (probably the third blog I’ve started then forgot about). But this “blog” is my rants & raves in dealing with Lupus SLE. You won’t find healthy recipe ideas or uplifting quotes of being a fighter or an inspiration. It’s the dark blog. Or, what’s REALLY going on, on a particular day with my Lupus & treatment. How I live with it, how I cope, what I’m feeling, what meds I’m on and how are they working. Stuff like that. Since I rely on social media these days to  communicate, along with the fact I seem to NOT be able to keep a smile on my face lately, it’s best I blog it & not Facebook it. I could just write a diary or journal, both of which I’ve tried. I’ve got notebook after notebook and after finding them around & reading through ten years of entries, I’m depressed to say, my life hasn’t changed & I allow the same damn things to effect me & the same damn people to get away with it. I’ve always ended my journaling with “But it’s got to be ME causing it so I’ll continue to work on myself” oh how PATHETIC! I have been working on it, didn’t help. I have downloaded so many journaling apps I use once or twice I see that taking the time to tell myself what I already know isn’t a good use of my time. That if I’m going to bitch about my disease then I should let others in on the party!

See, I’ve always been known as this sweet, quiet, always smiling little person who never complains in public but does her share behind closed doors. But you can’t hold that real stuff in. You need to get it out.

Talk about behind closed doors! My last three hospital stays I’ve had ZERO visitors except for my ever faithful sister and brother in law. And a slew of doctors I’ve never met and they obviously don’t communicate because they all ask the same questions in a matter of five minutes, then run out of the room as if they were Batman exiting in secret efficiency with only the tail end of his cape in view, fading away. Nothing gets fixed, I have to use the call button to ask “do I get to go home today?” “One moment please, I’ll buzz your nurse”  “ok thank you. Yes, please buzz her” Then I get their SEPARATE bills from the doctors & the hospital.

So I’m finding writing about it then seeing it the next day on Facebook saying OMG why can’t I just shut up! And I delete it. Isn’t the way to go.

I can only hope I’ll remember I set this BLOG up and that I’ll remember how to log into it.
I hope I figure this out.

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I’m Lost….

This should be easy, correct? But not for me & it has nothing to do with lupus. I just can’t figure out how to add tags.  I used to be a web designer!! I’ve lost it :/

oh well, I will figure it out.

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

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