Lupus Funk is not welcome here....

     Fuck that Funk!  Well, that's what I'm going with for now.  And by now, I mean right now! I'm living in the moment. I finally drug my plumper than should be ass out of bed.  I've been laying in my bed wallowing in swollen self pity about the nasty humidity, oppressive heat and the grief it is causing me! The hubs has been doing pretty much, it all! Finishing up the remodeling, running kids, making sure the dogs and kids have food etc...( Yes, I know he's all that and heaven too. Please, I hear it enough!) As I was laying there watching Wicked Women I decided that it was time to just say fuck it! Get out the bed, big girl and get your shit done! It isn't going to do it self!

     See, the thing is, the one person who probably knows me better than my mother-shucking sister, is having a baby. She is my Greek goddess. She taught me how to open a combination lock in 6th grade and we were bonded for ever. I had to get out of this house and buy her little spanakopita (spinach pie for the Greek challenged) a gift. It couldn't be breast feeding pads or baby puke cloths. I had to do this myself. It needed to be from me and have my touch!  I did it.  While I was out, sweating my ass off, I also bought myself a little something to wear. It wasn't anything special and it sure is hell not the size I want but if I don't feel good in the skin I have right now, how will I ever start working on getting where I want?

     As of right this moment, I have a lot of things going through my mind.  I'm having some more intense Lupus symptoms flaring up along with the Chron's.  I've got my mind set on fighting through some of this fatigue and taking back the time I spend in bed.  I need to focus on my diet, exercise, and inner health.  Not to get all, crunchy granola on any body but I'm thinking getting back to as much organic as possible and very close to vegetarian minus some fish and an occasional filet mignon.  I also need to find the energy to get my run on.  It makes me such a calmer person.  I feel so strong when I run and even stronger when people are shocked that I run with Lupus.  Enough of my rah rah rah self-cheerleading! I just like to share, for those who have Lupus and for those that don't. You can always start over and change yourself!

     I figure I should wind this long winded all about me blog up! I have a busy day tomorrow.  I get to see my Greek Goddess and all my girls from high school and college. We get to drink Bloody Mary's and champagne toasts til we are silly and make her jealous! I also have convinced the Greek to let me take some pics of her belly! There is nothing as beautiful as a pregnant woman and her belly. I did it 4 times and never had one picture! So, I'm absolutely thrilled to think I can give her that.  Ahhh, the beer and sentiments of the evening are getting to me!  It's time to call it quits!

Take Care of You....

The Lupus Funk.....

     Dusting off the cobwebs and scaring the dust bunnies off this computer, because it's been quite sometime since I've had anything to say!  Most people would say that's a big fat lie! I'm always running off the mouth about one thing or another. Just lately I feel like I lost my "umph" to make light of or poke fun at Lupus or myself.  Or even other asshats around me.  It's so not me.  I think I have a Lupus funk!  And aside from the other shittastic things that Lupus does to me now it has given me this.

     I would clinically describe the Lupus funk as the inability to find  one single thing to give a fuck about!  I don't give one fuck that the Royal baby is over due.  I give even less fucks that the montage of reject female pop stars are shaving heads and piercing their lady bits! And least of all I have run out of every fuck I have to give, when I listen to "friends" complain about their first world problems as if the world will end if you were fifteen minutes late to work because there was a back up at the drive through to get your non-fat soy mocha-sucka-latte!  That is the Lupus Funk.

     I think I caught the Funk this weekend.  I very much enjoyed myself. We went to a food truck rally and tried amazing little bites of all kinds of amazing foods and sweets on Friday night. Then Saturday morning  I got to watch the Little play ball and drink my morning coffee.  Followed up by an impromptu garage sale/BBQ/pool party with the whole fam damily and my besties Lu & Opie! We had such a blast! I was a good girl. I stayed in the shade as much as possible, at well, and didn't over serve myself beer.  But sure as shit, the Funk got me.

   It's over a 100 degrees here with the heat index and equally as humid.  My hands are swollen like sausages ready to burst. My joints are screaming for me to just lay still cause the weight of my plump ass makes them miserable.  I have ulcers in my nose and mouth.  All I want to do is lay in bed and feel sorry for my Funky self  with my monster dogs who also hate the heat ( thank goodness for a king size bed)!  I feel funky and I don't give a fuck who knows it! But that really is a big fat lie.

     While I lay here watching Southern Fried Homicide, the hubs and the spawn are off to the besties to swim, BBQ, and drink icy cold beverages.  I want to do it.  I need to do it.  I need to get off my ass and go enjoy all of it!  But I'm afraid to make the Funk mad! Will it get worse? Will I be even more funky tomorrow? I can't decide but the itty bitty part of my sappy side can't stand to miss out on the boys in the pool and hanging out with my friends! Hmmmmm, what to do?  I think I will take a shower and think on it. Check back in tomorrow and I'll let ya know who won.  Me or the Funk!

Take Care of You.....

If at first you don't suceed.....

     Apparently, I am a glutton for punishment or a dare devil. It's whatever side you  look at it! We are headed back to the lake with the entire fam damily!   It's America's Independence Day so why should I miss out on all the festivities. Nothing says a good time like the Oldest being miserable with forced family fun, the others yelling when are we going to get there , and me with the butterflies in my belly! I don't want to be sick.  I don't want to get sun burned.  I don't want to miss out on the fun! I'm just a touch nervous. Not to mention, I have to squeeze my large ass into a swim suit! Woohoo!

    I'm heading out tomorrow to buy the biggest hat I can find and I've packed every sunscreen with in a 5 mile radius! I'm going to rock this shit! After the week I have had, I damn well deserve it!  First, the major irritation of my Mistakiest Mistake* and his clan throwing a hillbilly hell of a shin dig and involving my 2 oldest spawn, making them miserable, in turn, making me miserable. Second, we decide on a whim to redecorate the entire main living space of our house.  Nothing says "too close for comfort" like 6 people and 2 massive beasts with no living space furniture! We all hate each other, pretty much. Well, hate is a strong word but none of us want to have any delay in the process of getting back to normal! And lastly, third, I just want to enjoy the Summer. By this time last year I had my white-girl Beyoncé going. I was all shades of tan with fake ass blonde hair and big butt. In my mind, I looked like Beyoncé but most important we were having fun and I felt good! I want to have fun and feel good!

     I'm keeping this one short and sweet because I have to get back to packing! I'm also bringing my running stuff.  I think maybe I have lost my damn mind! I think I'm going to boat, sun, play, and run! Who knows, maybe it will work out! Or it won't and I'll have hilarious stories of my misadventures.  Either way, I'm in 100% and ready to get my toes in the water and ass in the sand! Hope everyone has an enjoyable holiday or weekend, which ever you choose to celebrate! I'll be celebrating everything even if it is just that  I made it through the mini get away without selling the boys to an Amish farm!

Take Care of You....


* Mistakiest Mistake will be explained in a later blog for those who do not know.

Our Life with Lupus

     Officially, I'm the laziest blogger ever! No, screw that, I have Lupus! I can't let my lack of blogging guilt me, too. ( Even though I totally do.) Things have been a lot of the same since the trip to the lake.  Medsday Sunday, means Mother Fucking Monday (MFM). I refer to is as that with sheer honesty.  I, as the mother, feel like I am getting fucked over every single Monday!  The Littlest plays tee-ball every Monday, and I've never made it to a Monday night game ever! It kills me!  To see him in all his 5 year old swagger with 7 pieces of bubble gum in his mouth and his batting gloves in his back pocket, kiss me and walk out the door. I cry usually when they leave. I try to shower. I think it will soothe my soul and my physical pain, but usually I just don't. I wait til my meds get the better of my brain and hope that Train Wreck Tuesday is better.

     Train Wreck Tuesday(TWT) is my idea of lets try to make-up for the shit I didn't get done the day before.  That is also some sort of cruel joke I play on my self as well! The Middle usually gets the Littles breakfast and lets the dogs out before I even make it down the stairs.  It's funny how I can't exactly decide how I feel til I stand in the hallway between the bathroom and the kitchen.  It's my crossroads.  It's right there I decide whether I'm going to take my meds and go back to bed or take my meds and have a coffee.  Sounds like life altering shit right there doesn't it?  It is to me.  When I can't start my day with my boys, I'm missing out and counting on the Middle to carry the weight of worrying about me and watching over the Littles. Its unfair to both of us, and usually no matter how I feel everyone knows whether I'm pushing it or not.  TWT is usually a low key day because the Little plays ball on TWT.   The hubs coaches his team and the Little is bad ass. But he's shy, cool, calm bad ass. Like a real athlete should be.  He does his job and doesn't show boat.  I've only seen 2 Tuesday games.  Mostly because I over did it in the morning and fall asleep. The hubs won't wake me, but the Little is pretty good about giving me the play by play. It will never make up for time missed but it does heal my heart some.



 

     So, I'm not going to bore you with my everyday woes and wanes.  Kind of pointless and really damn redundant.  I'm pretty sure I told the hubs the other day that this shit was getting really, old really quick.  Truly it is. I rely so much on the Hubs and the older kids. I can't help be thrilled to be so  fortunate to have a husband that understands that Lupus is our life not my illness.  My oldest boys are the most understanding and accommodating to what I can and can not do it is amazing.  They give me no business about anything, when I can't make it or miss parts that I'm dying to be a part of. They also know this is our life.  I like to think, that in the long run, the Hubs and I are making them better men, husbands, and eventually fathers.  Life with Lupus as a family is really teaching us a lot!

 

 

 

     Apparently I am the only one on the low end of the learning curve with this Life with Lupus shit!  First forced family function to the ball park, 87 degrees with 90% humidity, full sun, 3rd base line, nothing but processed pork products and beer! Hell yeah! Sign me up! I live for these days! I bought a new tank and linen pants, bug eye sunglasses, sunscreen factor eleventy billion, and I'm all set.  Lupus is not going to ruin my day at the ball park! Score, yet another, for Lupus! Sun burned, dizzy, sweat through my linen pants, and over all just want to die. Time for me to go and the entire family wants to chew the face off of someone else in the car! HOT ASS MESS! That's all I am going to say about that!

 

     Saturday is here, my belly has still not recovered. Pretty sure doc is right and Chron's it is. My skin is peeling off, joints are beyond pain and I'm all blotchy, so I look like a hobbling leper.  But what do I think will cure that, my Hubs homemade meatballs in red sauce and copious amounts of red wine! I'm not going to win any battles I'm fighting today. I think it's best to just fill my belly with what I love and spend time with those I love more. That's Life with Lupus today!

 

 

Take Care of You....



Yeah for Summer, I think.....

     Yeah, it's the first week of summer vacation! Womp Womp Womp!  Last week I got the grandeur idea that we would spend our first weekend of break,  up at the lake house! Take the whole fam damily , bring my brothers-from-another mother, drink boat drinks, have campfires, play hard, and enjoy the fresh air! When will I ever learn?  Two days before we leave I knew it, fever , back pain, blah, blah,blah,. I won a kidney infection! Woohoo! But, antibiotic and even more sunscreen I should be fine! Dr.C also prescribed me a non-steroidal stronger anti-inflammatory, hoping that will relieve my sausage fingers and Miss Piggy bloated face. Yeah for all those things! Boo that it makes me feel like a narcoleptic! Take it and I'm out mid sentence!  But I'm on it! These things won't stop me! I've got Super Lupus powers!

     Ha! What a fucking joke! The day we are leaving I'm fighting with hubs. He wants me to stay home.  He swears he can handle it all, I know he can.  He wants me to take the 3 days and rest. I use my go to answer, "Just let me take a nap. I'll feel better when I get up?". That's such a crock of shit! A nap doesn't cure anything but tiredness. It doesn't make joint pain, T-rex  retching, or kidney infections miraculously go! But damn it! I'm going to try! The hubs and the boys took the beasts to be boarded, packed the car, stocked the cooler and gassed up the monster truck.  All was ready, and the hubs asked me one last time, what was I going to do?

     Of course, I'm going.  Who will take the pictures? What if the littlest finally decides to tube?  What if the biggest fish in the lake gets caught? I knew if I stayed home I would lay in bed, feel sorry for myself, text the hubs every 5 minutes for a play by play of what was going on.  So, I'm going. We pack in to the monster truck and head off.  The hubs is always so good and patient. We stop to stretch. I'm still not feeling good but I'm going to fake it til I make it.  The kids are beyond thrilled and that makes it worth it. Right?

     Arrival to the lake is always beautiful! There is truly nothing more peaceful than the fresh air and a still lake.  Boys unpacked everything. Immediately take to the dock, the sand, the fishing, and hammock swinging commences.  This is when the hubs and I crack a beer, cheers each other for not going insane in the car, and realize how lucky we are to have a place like this!  Well, not so much. Lupus, that joy stealing crotch, raging her ugly ways. I hug the hubs and go to our room.  I just couldn't fake it anymore. I have to lay down. I'm nauseated, my feet are frozen in pain, nothing seems to be working right and the brain fog is beyond functioning.  I'm glad my little brother- from- another- mother is around to give the hubs someone to talk to because I'm down for the count!

     The weekend went on as usual! Everyone had fun and I peeked in and out every chance I could get my shit together.  I was glad I was there.  It is still nice to hear the fun even if you aren't part of it.  I did manage to completely drop the ball when it came to Father's Day.  I felt like a total ass.  I just couldn't get anything prepared, go anywhere, or do anything.  I owe the hubs so much more than one day recognition but it is an absolute kick in the teeth when I couldn't even manage that.  He always says he understands and I pretty much believe he does. He's just so understanding and good that  my crazy brain makes me wonder if he is really one of those guys from a Lifetime movie and is going to just snap! HAHAHAHA! That was totally for his benefit because he always harasses me about the crazy stuff I watch on t.v.

   Back to home and ready for a fun filled summer.  I'm not going to lie. I'm kind of nervous.  I've never been on all these meds.  I've never had a flare go on this long.  All I want to do is be able to keep up with these boys and enjoy the little bit of warm weather we get in the mitten state.  The sun has never given me issues before but I've never had so many issues before.  I do not want my boys to remember this as the summer that mom was sick.  So, I won't let that happen! If it means huge floppy hats and bug eye sunglasses, I'm going to be that girl! I may even find some friends to follow me around and take my picture. People will think I'm a celeb or something! Or not! Either way, I'm just going to keep on keeping on til August 30th when I see the "new ,latest, and greatest" rhuemmy! Maybe he can fix me, since apparently a nap won't!

Take Care of You...

Ramblings from me....

     I technically have no real rhyme or reason to where this blog is going or why I'm writing it.  I assume it is to  write  the things I like to say but can't. Or it could be, to take back the things I said in a moment of weakness because now I realize it was undeserved. Either way, this is my place do what I want, so if you don't want to listen to me ramble on about a whole lot of nothing, you are free to ignore this blog....just come back some other time cause usually I have a point. Today just may be one of those days I don't.

     I'm fairly put off at some peoples idea of family. Family is not blood, always. Family is not a necessity or value, always.  Family should not be pushed on you, ever. You should be able to choose who you call family, with out feeling guilty.  In a family everybody body  has a voice, an opinion, and a right to be heard.  Family is always your soft place fall and should never make you feel bad.  Whom ever falls into those categories for you, that is your choice.  I, personally, have a very small circle that I call family. 80%  of  them are not blood related. I don't feel bad about that, and nor do I feel slighted. I've seen "blood relatives" lie, back stab, disrespect, abuse, belittle, and take until the river ran dry from each other. I never want that for my boys. That is why they have a very wide mix of people in their circle of family. I will never change this. I also will not let wolves in sheep's clothing walk in and out at their convenience. Time spent in their lives should be more than just a luxury or vacation, it should be a burning desire to fight for come hell or high water even when things aren't  postcard picturesque. So, yes as I re-read this, it's a little preachy, but it's not just for me.  It's for a lot of people I know.  Stand up for yourself and your family and don't take anything from anyone anymore. I know I am not.

     Ewwww, that was very high an mighty of me. But guess what? I don't give a damn.  Yesterday was kind of a cluster fuck of a family day.  The littlest started us out at 5a.m. buy dumping a liter of water on the two of us all warm and snug in our bed. I still got the move on with optimistic feelings and warm coffee in my hand.  The plans of making a big family dinner with my mother shucking sister & her spawn, watching the little play ball, and ending the night with a nice glass of wine. That was the Norman Rockwell hopes for the day.  When in reality, all of those things happened, but not at all was any of it picturesque. Rude interruptions from a far, fits, crying, dirty faces, freezing cold ball games, under done orrechettie pasta at 8:30, exhausted feelings, fear and me feeling not so well. How the hell did this happen? Life just happened. When life "just happens" and you have Lupus, it can set of a shit storm of symptoms.

     I went to bed worn out and overwhelmed.  I woke up worn out and overwhelmed.  I figured I could let this day get away from me. Let the exhaustion, nausea, hives, and tension headache eat away at me and lay in bed with the littlest all day.  Then I realized letting any of that get in the way of me appreciating what I value so much everyday is just stupid. I'm going to not take for granted what I have in my family circle and enjoy them. It may not be perfect but it's mine and they want to be here. That's what is important.

Take Care of You

Where's the Hidden Camera?

 Oh Monday....you are such a nasty bitch!

     Sunday is my meds day.  I take my MTX.  It doesn't hit me as hard as it used to but I still get a little pukey and just worn out.  Up and running first thing this morning to get the boys out the door, I go bounding(my version of bounding, which is really more of a hobble) down to the basement to get the dog out side for the morning and holy hell it hit me.  My brain & belly got a delayed message that I was up and active and decided to put an immediate stop to that! All of a sudden sweaty, mouth watering nausea and panic(because the closest bathroom is the Boy's bathroom) took over. I'll spare  you the rest of the gory details ( courtesy to my hubs) but needless to say the dying dinosaur appeared ! I collect my self, tell the kids I'll be right there, and then holy hell the toilet starts over flowing! Fuck My Life right now! This is not my job, this is not my thing! Damn it, I don't even know where the plunger is!

     Conveniently, plunger is right next to the toilet!( You learn something new everyday) I plunge away, flowing water everywhere, and freaking out cause why the fuck is this not working? The inner smarter me, kicks in and says put down the plunger and walk away! I did. I walked away. Got some towels, washed my hands like a brain surgeon scrubbing in for surgery, brushed my teeth, and went back in determined not to call the hubs crying for help!

   Towels placed on the floor, garden clogs on, plunger in hand and just like that, I did it! Officially, I can now add plumber to my list of talents! I was so proud! Until I realized that their is a reason that plumbers charge so much, the clean up is beyond disgusting! Clean up, re-scrubbed myself, and back to Monday I go! No big deal, just one mishap! Resume routine...dogs out, kids fed, dogs back in, kids out, dogs fed, dogs back out, morning meds in, and finally dogs back in so the littlest and I can relax! Or so I thought. Damn that Daisy!

     Dogs go to come in and that Daisy has managed to devise yet another way to get into the pond and my beautiful fawn mastiff is covered in pond sludge and happy as hell! OMG. Who is video taping this? Where is the Punked crew? I have no dog shampoo. The dogs get groomed. They are huge. My hands aren't strong enough to hold them. But I have to clean her. I get a towel, her leash and the littles Avengers soap.   I have no choice! Hose and dog in hand I'm expecting an absolute shit show of Daisy and I on the deck! Nope, she sits there like a princess. Happy as hell to be getting a bath! Jeebus Crust, does she think this is a reward? What have I done now? Oh well, at least she's clean and dry.  The littlest and I can finally have our chill out time. Or not! The littlest can ask for a mustache.

     Really, a mustache?  Ok, I'm game. I'll draw him a mustache. Hell, I'll give him a mustache, goatee, and chops if he wants them. As long as we can just cuddle and play brain games on the ipad after! Oh no. Not today, he wants a real mustache!  Well, I may be a plumber but I cannot stimulate hair growth on a five year old. I'm good, not that good!  He cries. I cry. We compromise with he can play Xbox and listen to the ipad at the same time! Screw it! I'm picking my battles and if he rots his brain for an hour this morning so I can share the unbelievable morning I had, so be it!  If I didn't write this down, no one would believe it!

 All is well now!


Take Care of You.....