Saturday, June 29, 2013

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....

Tuesday, June 18, 2013

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...

Wednesday, June 5, 2013

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

Monday, June 3, 2013

Where's the Hidden Camera?

 Oh 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.....


Saturday, June 1, 2013

Letting it go.....

     There is nothing easy about being the momma to four boys. There is nothing easy about Lupus.  Put those together and it's just short of overwhelming.  This morning was one of those mornings.  These type of mornings that are just a whirlwind of jock straps, dirty cleats,missing baseball hats, forgotten water bottles and four letter words. The littlest (A) had his first tee ball game and pictures. The little (B) had ball game and pictures. The middle (C) had football camp. The biggest(D) has a district final  games potentially a double header for the championship.  All of which happen with in a few miles of each other and all about the same time. Not nearly enough time for the hubs and I to do it all alone. I called in the boys Aunt Chris. We have it all set. Then life happens!

     Torrential rain over the past few days has all things FUBAR. B's game cancelled but still pictures. D's game post-poned for 3 hours. A & C things are still a go. So, Aunt Chris got relieved of her duties and the hubs is managing it all. The reason he is managing it all, is because of the fabulous humidity  and my need to over due it yesterday trying to clean and get everything ready for today.  God bless that man. I swear he is not perfect. He can actually be a total ass at times. But when it comes to these things I think he needs a medal!

     I'm in bed, medicated with two foul smelling mastiffs! My legs are in a pain I can only explain of as what James Caan must have felt in the movie Misery when Kathy Bates hobbled him. It's making me a little loopy it hurts so bad. Loopy and foggy are also a charming talent when I try to be productive by emailing and signing the kids up for summer activities. I can't remember who's what age and which sport I'm emailing about. I'm a one woman shit show!  My own self guilt for missing things and not spending time with the hubs has my belly in knots and keeping no food down.  I'm passed the point of foggy pain and just moved on to my one woman pity party. ( Seriously, the way these dogs smell no one would come to my party anyway)

    This pity party includes an ipad, my iphone(aka my woobie), my laptop, 250lbs of dogs, and at least 11 pillows.  This is just in bed. I also require my air conditioner, a fan and two sets of clothes on the floor ( one for when I'm freezing and the other for when the sweats kick in). On my night stand I have my water glass with straw (teeth sensitive thanks MTX), remote control, and house phone.  Just when I think I have everything covered to lay here and feel sorry for myself I realize I need my glasses because I can't read the tv guide from the bed! Damn it! I have important decisions to make here. I must see!

     These important decisions I have to make will determine how crazy my texts will get later.  I'm beyond obsessed with NatGeo and ID.  I flip flop between my fascination with Alaska and creepy psycho killers. Alaska is winning right now. I seriously have this plan working in my brain of a relocation there (that is a blog in it's own right)!  I will probably switch to ID and watch a Wicked Women marathon  for a while. Nothing makes a bedridden medicated woman feel better about herself than a show about husbands who woo needy women into killing their chronically ill wives for the insurance money! Ha! I'm just getting sillier as this goes.

   I'm so glad I started doing this! I already feel a little better for just laughing at myself and writing down my self guilt issues. I realize I need to get over it, because those who know me and love me understand. Even the wee littlest won't hold it against me so I should let it go! So, that's what I'll try! The pain, well that's just going to be there today. So, a nap and some meds and hopefully a nice family dinner. Funny, I'm already feeling a little better.

Take Care of You