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?→
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.→
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” So 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.
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.
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….