lupusfightermichelle

Hello everyone! My husband finally came home! It’s been so nice just having that help already by taking our youngest to school and picking him up for me. The school drama is being taken care of by my son’s special ed teacher so that’s awesome! I worked with my Raiders and I also need to call my insurance company tomorrow to change neurologists because the one they sent me to is not going to work out. Oh yeah, and I have a cold. After taking my son to school, my husband came home and we went out to breakfast Monday morning. I had some marijuana and I ate. Like, I ATE. I got in an entire meal and a little dessert. It was amazing! I generally can’t really eat until about 4pm when I pick my son up from school and have some pot but my husband was driving today so I was good! Well, until about 5-6 when I lost some of it. Nothing had moved, until then. Thank you gallon sized Ziploc bags. You saved my van Monday Most of my Raiders got all of our knots down so we’re going to start putting u...

Greetings everyone. I hope everyone had a wonderful day today. I am exhausted. Eating is still difficult and by the time I get to where I can smoke pot to be able to eat, I’m literally pulling myself upstairs, sloth style, if I need to get up there. Today was busy. The last 24 hours have been busy and stressful. We’ll begin with the Raiders team I am now taking over. I have to become proficient at four knots, and at knowing how to build a rope bridge in accordance to JROTC standards. I’ve never done this before but I have to learn it to teach it; otherwise, there is no rope bridge next month at the JROTC repelling event. I was never a soldier and I feel like garbage, but it’ll get done and these kids will know it inside and out when they have to run the station because that’s how I operate. I’ve made calls to various teachers and JROTC officers about curriculum and such. Next week I will be meeting with First Sergeant to discuss having soldier volunteers and field trips beca...

Hello Everyone. Well, it’s been an interesting couple of days. It turns out I’ve lost 10 pounds so far these last three weeks from the issues with gastroparesis. Not that it’s hurting me at all. Don’t get me wrong, it sucks. But, I have plenty to lose and I’m getting my nutrients in so I’m not in danger of malnutrition or dehydration at this point. Just crankiness, headaches, nausea, fatigue, and the occasional throwing up. Fun. Oh yeah, and the weight loss. I’ll take that one. So I took my eldest son to the Adolescent Ped. Doctor and mostly spoke with the resident. He has vitiligo on his neck and it’s spreading to his face. Vitiligo is an autoimmune disorder that attacks the skin and essentially destroys the pigment. Michael Jackson had Vitiligo and that’s likely why he bleached his skin, because it spread and he was embarrassed to have white spots all over his body. Vitiligo can be benign, it can cause some issues, and it can end up being co morbid with other autoimmune diseases. T...

Hello everyone!!!! So, I get that it can be awkward to discuss Lupus or other diseases with people when you don’t have it or you don’t know what it is. But, for me, the most awkward conversations regarding the disease are when people are like, my friend’s wife er whoever has lupus. Ummm, ok. Sweet. We have that in common. It gets even better. “My friend or my husband’s wife has Lupus but she’s doing great. She just really plans her vacations carefully because apparently sun can be an issue”. Sure, yeah it can…. Which is crap. I’m from Southern California. I love the sun! I love summer. It’s my favorite season. So, I want this as my compromise. Since the sun can be my enemy hardcore, I wanna be a vampire. I want to glitter in the sun like the Twilight vampires and have to get out of the light because people can’t handle my shiny awesomeness. Plus I want to run super fast, be super strong, and I want to be healed. By the way, I’d love a vacation. I’d love to be able to afford a vac...

Well everyone, I finally did it. I make my first vlog. I did it on tips for living with gastroparesis because one of my favorite lupie peoples has gastroparesis issues and so do I. I've been going through it for a few weeks actually with this bout. Last time was three months. Yay! Friday I see my Rheumatologist. I received a call today from my family practitioner's clinic and they offered me an appointment for tomorrow with another doctor who I cannot stand. I told the guy I actually have standards and there's a reason she's the only person with openings. He wasn't happy with me about that. It's one thing when you're behavior is as caustic as House but when you're not that good, we have a problem. Don't front if you can't rep it lady. So, I cannot get in with that doc until next month. That's cool, I'll be shooting myself up with Benlysta before then and praying that helps. Or, not, we'll see. I'll find out Friday which means you...

Greetings everyone! Well, I have taken myself out to lunch in an attempt to keep myself busy since I am recording my parody to “Let it Go” called, “Prednisone” today at 2:00pm PST. I am so nervous. Will I actually be able to eat? The food here is great and it’s my friend’s restaurant, Happy Teriyaki, in Lacey, Washington. I got my food and almost threw up since I still have trouble eating but at least I’m not at home singing loud enough to piss off the neighbors and I have my laptop. I will try to stuff something down. Chicken teriyaki is one of my favs and it hurts my heart that I am looking at this but struggle to get a bite in. I hope they aren’t offended when I have to get a doggy bag and put most of this food in it. I will tag Lenny, my friend the owner, in my Facebook share so he’ll know it wasn’t him just incase it gets back to him since he’s currently on the grill. (I did use pot later and ate is all. It was great!) Random selfie which I don't exactly do often, ever. ...

Hello everyone! So, I feel drugged today. I feel like I had the greatest night out with the ladies drinking and partying. I did none of that. It's my cycle. The estrogen has risen and my body shut it down yesterday. I was in and out of consciousness from 5pm yesterday till 6:05 this morning (I needed that 5 minute snooze). I could have snorted caffeine and cocaine, taken a shot of adrenaline and I still would have passed out. I had no choice about it. I was supposed to make bread because we don't buy it anymore. My eldest son would have to wake me up here and there to get verbal assistance because he chose to do it for me. Fortunately, it turned out well, I gave him a cookbook handed down to me from my mother. Thank you Mom! We make rolls instead of loaves so we don't have weird uneven slices. It works and they love it.   I wasn't sure what the hell was going on at first. I need to get back on ovulation strips and start writing down cycle estimation ...

Good morning. Well, I still have an abundance of energy, thank God! Generally, as I have previously mentioned, I feel like crap on prednisone. I mean, I cry like a two-year-old to my husband about not wanting to have to get on it again, which I did in this case. I hate this stuff. I have no pants for this upcoming winter because I have gained so much weight and I’m stubborn enough to say, “Screw it, I’ll freeze”. I do not want to buy bigger pants. I lost nearly 100 pounds after the wheelchair and I tossed each pair of pants out, one by one, as I lost weight as a personal victory ceremony. Now I’m like, “Why couldn’t I have been a hoarder?” I still can’t eat so there’s that. Perhaps that’ll help me lose a pound or two. Lord knows I have enough fuel in my “assets” to sustain a small nation for a week or so, so I’m not really hurting as long as I’m on my vitamins and hydrated. Prednisone causes a lot of super fun things, one of which can be insomnia. My other half was at traini...

Good evening everyone. Was back in the E.R. again yesterday. My heart rate is slow and it’s causing breathing issues. The Rheumatologist didn’t want me on prednisone until I saw a neurologist so they called the neurology gang down to inspect me. Thank God because I was on my way to pulling some kind of John Q craziness to get some help. Ok, well I fantasized about it but I’m not trying to go to jail. I feel like that may not be the best place for me although I would get free medical and dental. Apparently I was a fall risk Elephant condom   Mostly pimped out cane I am back on prednisone now so this nonsense should be better soon. Today I feel like I can do back flips. I’m not going to because dying is not on the agenda. Plus, the kids are at school and can’t take video of me breaking my neck for Ridiculousness, so priorities. I have been cleaning this house like I just got my hands on an eight ball though. This place has been an absolute wreck without me being...

Greetings everyone. Today was your average, uneventful day. I forgot milk yesterday and had to pick up some more guitar strings because my son is “learning” this stuff. Michaels just happened to by right by the store so I picked up some sparkly purple spray paint, sparkly pink gem rope and 80’s My Little Pony stickers. My cane is pretty pimped out. I ordered my Rainbow Brite, Deadpool and Xenomorph stickers so it’s not finished yet. The little girls rubber necked as they walked by my cane after school today. I imagine it looked like a cool princess wand or something. The parents were not altogether impressed. I got shot some pretty interesting looks. Guess who cares? I don’t. I found out something interesting. I am not “tagger” material. I am not adept the ways of the spray paint which is why I have large drips and awkward bubble patterns in various areas all over my cane. Guess what else I found out. You cannot cover all that up with My Little Pony stickers. I will call it texture a...

Hello everyone! Well, I’m couch bound for the rest of the day. I may require the help of my boys to get upstairs to the bedroom because my drunk walk has reached level blackout. I look like your average daytime Russian alcoholic. The kind even they  have interventions for. The imbalance is so bad I’m bending backwards and walking backwards like I’m 125 pounds, it’s my bachelorette party, and I will out drink that sailor because I bet him $5.00 I could! I had to pick my son up some guitar and violin strings and then I had to hit the grocery store for a couple things. It was rough. I lost myself in the store multiple times and had to figure out what I was doing. On the way home, less than an hour of my last Zofran dose (anti-nausea med), I had to pull over to throw up what little fluids I had in me, on the freeway. My 14-year-old held his head out of the window while reaching his arm across the car gingerly patting my back trying so hard not do blow chunks himself. All I ...