Lupus can suck it!

     Well, isn't this just appropriate. What a wonderful holiday weekend me and the fam had at our little piece of heaven. The boys fished their hearts out. They even got in the water and tubed. The air temperature was cool but in the sun it was beautiful.  The hubs and I got to be together but still spend time with Mom and Dad. We talked about all kinds of things, played cards, and watched the Memorial Day tribute together. That's our tradition.  My soul felt warmed by the reality that summer was just around the corner and all the fun things that I have to look forward to.


     For the most part, I took it easy. I napped when I needed it, I didn't bake in the sun. I ate well and never over did it with the drinks.  I was good! So, now I'm pissed!  We came home to a little rain and dampness.  I started to feel the aches coming but I just figured it would be something that a little rest could cure.  The hubs had to travel across the pond for work. We kissed him good bye and the whole clan was ready for bed.  I took all my meds including my Methotextrae (MTX) watched my DVR'd show and went to bed. Then bam like a train hit me, I fell apart.

     Fever, sweats, leg cramps, excruciating joint pain in my legs from hips to the tips of my toes. Shoulder pain so bad I couldn't lay down. My heart was palpating and I was vomiting like Linda Blair! My brain was confused.  I felt so great for the passed few weeks. Why? What the fuck did I do to get thrown back into the flare?  I  thought I put this out of the way for awhile. I assumed that I was going to have a nice decent stretch of time to just feel normal again. But no, not for me!  I'm mad!

     This is the mental mind fuck of Lupus and the trick it played on me. It has me in such a mood. I can't decide what to do.  The bitch inside of me says to just take today for a fluke instance and that I will be back to feeling good with just a little R&R.  But there is that small weak person inside my head that  says this is your life suck it up. Don't expect anything more than one good day at a time. I don't trust that either of those voices inside me are the truth of what my life holds for me and that is scary.

I'm not a scared person. I'm not someone who enjoys sitting on the sideline  of my life. But most of all I am not a person who likes to lose.  So, I will fight. I will fight through this and walk cautiously when I do feel well and not expect anything . Enjoy the day and time in front of me.

 Shameless sappy shout out to my mother-shucking sister for taking her day off to come take care of me and the boys. It means all the world to me.  I hate that she has to see me like this but there would be no way I could have gotten through today with out her!  She brought all her spoons to share with me so I can get back to good.

Take Care of You....


     

It's Summer Time

     The official start of summer. The official start of Forced Family Fun! Woohoo! Nothing gives me the warm and fuzzies like a three and a half our car ride with the whole fam damily and the smelly beasts! Actually, it's not that bad! The hardest part for me is truly the sitting and potential stiff, painful legs.  I'm hoping that since I am feeling better it won't be such an issue this trip!

  So here's to bloody Mary breakfasts, boat drink lunches, and cold beer dinners! That's just part of the fun! Boat rides, fishing off the dock, and watching my crazy boys jump off the dock for the first time into the freezing cold lake!  These are the things memories are made of. Big breakfasts made by the hubs, hot dog lunches on the beach, and late evening bbq dinner with smores for dessert! Those are my favorites, because I have to do barely any of the cooking!

   Even better than that is grandma & grandpa! They are the best.  When I need to rest or if I over due it they are always there to pitch in with the boys. Fixing tangled fishing poles, playing baseball, or handing out chores so they can earn their keep.  The hubs and I also enjoy them. We have fun watching the Tigers games, playing Euchre, catching up on politics and just hanging out. They really do treat me more like a daughter than an in-law and for that I am so lucky! Mom ( I call my in-laws Mom & Dad) always revels in my direct parenting style and shares her concerns about how I do it all with Lupus. It's nice to tell her, it's only feasible because of the amazing son she raised. And just about everything the boys do Dad tears up because they are all the apple of his eye!

   This is not a "bragging blog" or "look how lucky I am" statement. What it is, is me finally being able to see the forest for the trees and be happy. I'm not worried about the what if's when we are there. It is my little piece of fantasy land where my children can run like wild monkeys, the hubs can nap in the hammock and I can go for a run in woods! We sing country music loud, make raging fires, and forget about work, school, sports, and most importantly Lupus!

  Can't wait to share the stories and pictures when I get back! I'm so excited to start taking pictures again! My sappy and happiness is just disgustingly overwhelming! It's certain to at least dial down a notch once we get in the car and the littles start asking how long til we are there and  the dog starts stinking up the car! But that is life, well mine at least, and I feel very fortunate for all I have despite Lupus.

Take Care of You

Waiting for the other shoe to drop....

     I feel good!  It's so scary to say out loud. It's been a little over a week and my goodness, I've had such little issues with my Lupus I'm scared.  I'm walking on eggshells, so to speak.  I feel like I'm undercover, hiding from a stalker. Just waiting for the son of a bitch to show up and snatch my life away from me again. I don't want to feel like this, I want to enjoy this!

    I spent the weekend watching the boys play baseball and it was fun.  I went to the greenhouse and bought all my flowers and even a flat of corn. It only took me a few days to get it all done! Last year I didn't even get outside. I managed to sit on the patio and drink beers ,and get some sun! No repercussions!  I couldn't believe it,  myself!  It just feels so nice to be functioning! I'm not going to lie. I'm still napping a lot, but I'm spending more time being me and it's nice. Looks like that 6 week plan is working out!

    The holiday weekend is fast approaching and I can't wait to get to the lake! I need my boys, campfires, fishing, bbq food, boat drinks, and relaxation.  I think that will help me except that this summer is going to be good. That I'm going to be on top of this Lupus bullshit and I'm in charge.  I'm truly going with these positive thoughts and that's that.

    So here it goes, cleaning, packing and prepping! When I get back I'm sure there will be plenty of pictures and stories to share. And hopefully nothing but healthy vibes from me! 

     Take Care of You...

Sleepless In Dearborn....

     Well, isn't this just par for the course! I spend the better part of the week laying low, taking care of myself, and behaving and now I can't sleep for anything! It's fucking ridiculous how irritated I am right now.  I assume I should really learn to accept nothing less than two steps forward and one step back.  I assume that is what I was laying in bed arguing with myself about anyway.  So I figured why not get up and bitch about it for everyone to read what the voices in my head are conversing about at 3 a.m. in the morning.

     For the most part I did a lot of medication taking, sleeping, and watering flowers.  Oh yes! Trying week I know.  I'm sure there is a majority of people that share in the sentiment " I wish I had your life". It's certainly not all it's cracked up to be. I had a lot of pressure on me to be the optimal Lupus patient this week.  The hubs really gets his panties in a bunch when he travels across the pond and I'm less than in mediocre health.  A. Because I bitch. B. Because he stresses. C. Because I bitch D. Because the time change is hell on our communication and it makes me bitch.  So, I was a good girl. Finally, felt good today.  Went to the salon to make the spring change to blonde and wispy. I felt normal.  I indeed felt so normal that I finally got to see the biggest of the boys play baseball for the first time all season!

*DISCLAIMER* This blog was interrupted by a damn Windows 8 upgrade. Which then logged me out of everything. And with loveliness of brain fog I forgot my son of mother ducking password. There for I had to get technical help from some ass clown. Giving my train of thought an entire misguided direction into "How much I'd love to stick my foot up Bill Gates ass, land!"   

  I finally got to shred the crown of worst mother ever. I saw the boy's start at Varsity catcher. Yeah, and I didn't burst into a hideous rash from the sun or die from the fresh air! Score one point for me!  I still had the pangs of Mother's guilt because I wasn't my typical loud mouth self, screaming at the ump and taking pictures.  But I was there. It felt good.  It did feel so good, that I really want to go watch him tomorrow too. Along with, do some laundry, plant a few flats of plants, give the dogs a bath, make a crab boil, drink cold beers in the sunshine, clip coupons, make a meal plan and take a nap!

   I'm pretty sure not even half of that will get done. I'd be thrilled with just a few of those things.  There was a time when I could do that and not worry.  Now I know better.  Knowing better doesn't always feel better. But I will do what I can and report back with all the great details! I'm hoping to pull out the camera. So, maybe even some actual pictures, and not just the ones off my phone.

    As far as the running goes, haven't quite been able to jump back on that bandwagon yet. I'm hoping that Sunday or Monday will be the right time. It seems some of the tweaking of meds is working in my favor. It appears that I will be able to start back slow and steady! I'm looking forward to it. For anybody who has ever run, you understand what I mean when I say, it is it's own therapy!

    Not exactly any more tired, but I have less things running through my head.  Time for some Night-Nite tea my mother-shucking sister bought me and to let go of the hateful feelings I have toward Mr.Gates.

Take Care of You...

It been a while...oops!

     I'll admit it, I suck! Its been almost a week and nope I haven't reported anything.  It's been almost a week and I've done so much and experienced so much and still haven't shared anything, I suck! To be completely honest I didn't even realize I hadn't blogged since last Wednesday or that today was Tuesday til about 4.7 seconds ago, I have absolutely no concept of time.  I feel like I've been sucked into a weird time/space continuum of feeling well, acting well, recovering from life while pretending being to well, and not feeling so well. I suck at playing all these "Lupus roles" as well as the other people I play in my life! I'll admit I have no shame!

     Briefly, since last Wednesday, I had girls night, ran in the Color Rad race, froze my ass of at my first Tiger's game of the season, did the Mother's Day, and now suffer the recovery of all that before the hubs has to travel. Really, none of this is easy.  But I tried to pick up little lessons of wisdom as I went through the roles of the weekend.

1. Ladies at the craft store are bitchy ,pretentious ,unhelpful snots!
Tee making supplies easy to find. Tulle for grown woman who want to make tutu's to run in, I have no damn idea! So asking around and searching, as if I was going to suck the life out of their crafty beings, no one wanted to help me and my fabulous Aunt Chris. I felt like they were intentionally giving me wrong advice and directions as if to thwart me away from the fabric cutting lady. They knew my lack of craft knowledge would slow her down! I figured it out and we managed ourselves. But for future notice, the craft store shouldn't sell $80 scissors and have such rude ass people!

     

T-shirts and tutu's were made! Girls night was a blast! We did the spa, ate room service, drank wine and relaxed before our run! Crafty bitches have nothing on that!

 

2.I'm not at good at recovery as I used to be.

As Lupus and I are progressing together I realize I don't bounce back quite like I used to. Cold, damp weather, exercise, whacky sleep, and booze all kick my ass. I had all that wrapped into one, then add emotional instability due to all those factors and Mother's Day! By Monday I was a train wreck waiting to happen.  I love all those things wrapped up into a weekend. I used to plan that stuff regularly! Now I have to space them out around huge gaps of time. I'm still not feeling great. I'm kicking myself and thankful the hubs isn't too mad that I've been a crotchety crank to be around since the weekend.  Just gave me a little insight into making a 6 week plan of healthy choices and decisions for getting the summer started out right and so that I can party like a rock star occasionally!



 

3. I do not deal with my grief  well and I deal with everyone else's even worse.

Mother's Day will always suck.  As much as I try to ignore it and fake it. Being a motherless person on Mother's Day sucks. The anniversary of said motherless -ness always falling on or around Mother's Day really sucks. I try to focus everything around everything but that.  I try to be there for my mother-shucking sister. I do that by serving copious amounts od red wine carbohydrates. Which is super healthy for the diabetic. Any thing to keep the focus off the fact that we are without parents but especially with out our mom on Mother's Day! I do pretty good at the avoidance of it.  I send her texts after she is home to talk about it.  I expect a full blown hormonal meltdown at some point during this month  from myself. (This is your warning!)  I'm blessed with great friends, family, and my hubs and boys make it all bearable.  There will just always be something missing.



   4.  Planning on healthiness is scary.

Is this possible? With 4 boys all of whom play sports & a hubs who's travel is picking up. Can I make this happen?  Am I really going to be able to put being healthy, running, and finding a new doctor at the front burner?  Well, here's the kicker.  I have to.  I like nice things to much. I want to enjoy said nice things to much, to not do it.  And I guess, this is my accountability tracker right here. Since, I've put it out there for all of God and country to read, If I don't do it then you will all know! So, tomorrow it's to the gym and meal planning. Back on my running routine and eating better.  I have my hair appointment on Friday and this weekend the garden goes in.  I have to make it through the rest of the week being good and feeling good. I'll let ya know  how that goes.



  Take Care of You....                                                                   

Before I was a Blogger, I just bitched...

     I have a busy brain but also brain fog. Which means for me, I have a lot going on but I can't get it out the way I want.  I have such a fun weekend planned and I've been working at putting my plans in order to be ready for the Detroit Half Marathon. It all starts this weekend with the Color Rad 5K. This race and weekend means so many things to me. I want to blog about that but I just can't put it together yet. So instead I decided to repost something I wrote a while ago. It's relevant because it is about running and that is a lot of what is on my mind today! Enjoy!



 So, everyone keeps telling me I should write a blog. I laugh at that b/c I’m sure it would be amusing until YOU were the subject of my blog….

I decided I needed to write a little something about running. I need to get a few things off my chest…and since there is no blog as of yet I thought a note would be a good source of venting!
I first want to say thanks to everyone for the thumbs up and positive reinforcement! I love it! But I do want to clear up the idea that I post what I run for the praise. I am SO NOT THAT GIRL! I do not post that crap b/c I'm saying “Hey look at me I’m running while you are eating your Egg Mcmuffin & drinking your eleventy billion calorie Starsucks mocha-sucka-latte”. I post to keep me from doing those things!

Off to rant I go…..

My internal love/ hate relationship with running….if for one hot minute I could turn off the fat hamster with mother issues that runs my brain, I’d be a whole lot less crazy (maybe). Every day, I talk myself into and out of running for a million different reasons. Sometimes I just do it in hopes that the voices will just shut the hell up. Needless to say, they don’t. They continue to push me running extra time and faster speeds. (I wonder if these are the same voices Britney Spears heard when she shaved her head and beat the hell out of the paparazzi’s car. I could see myself doing that too…but I’m taking medication for that now)

Sports Bras….ok, first really who the hell sizes these things? I'm a busty girl. I need some support. So, I assume when I buy a size Large “Sports “ bra it’s going to do its job. It’s going to keep the girls where they are supposed to be and not knocking me in the forehead causing a concussion. Because if you haven’t bought a sports bra lately, they come with push-up pads. They are removal but who fucking wants pads in a bra used for exercising? Nothing says sexy like sweat soaked foam that you have to peel off your chest! Or better yet, how bout the band around the bottom of the bra , it would be nice if it stays where it’s supposed to be so that  when I run I don’t have to tuck the “girls” in my shorts! I mean really, I'm trying to be the healthy me could it be a little less at the detriment of my boobs.

Shorts…I’ve tried all of them. I’ve yet to find anything that works. I initially started running in the longer basketball type short. Only to realize 2 things, First, there is nothing flattering about these shorts. I looked at myself and realized I looked very lesbianish. ( Not that I have anything against lesbians.( Actually, I myself would sometimes like a wife) With my uni-boob and long curve hiding shorts it appears I play on Ellen’s team. Second, once I started to lose weight and my shorts started to sag I went from looking like a lesbian to a wanna-be–ganster chick. As if somehow I was trying to look bad ass jogging saggy shorts with my granny panties hanging out! NOT SO MUCH!
I gave up on the long shorts and tried the running shorts! That is God Damn joke! If the size is Large on the short it should resemble something somewhere near a women’s large.( I say a women’s large b/c women know what a large means. Men obviously do not ,seeing how stories about fish & penises go! ) I’m running to get a smaller ass. I want to be able to where the running shorts and not have them creep up the chub-rub on my thighs. If I continue to have to wear these shorts that lie about their size and make me feel like a marshmallow I’m going to lose my shit! Capri pant’s it is for now!

People….I generally love the people in the neighborhood. They are all well meaning friendly folks. But sometimes I want to say STFU! For example, the old man watering his lawn who always says to me,”He doesn’t look tired at all”. This is in reference to Ayden in the jog stroller. Ha Ha Ha! It was mildly amusing the first time you said it. But we are going on a month of seeing each other everyday. I look like a dying moose by the time I run by your house. Don’t try to humor me with your corny old geezer one liner. Come up with something new. Squirt me with the hose. Give me the obligatory head nod. I’d even go for a hi-five or slap on the ass. Just stop with the same shit different day. Running is already pretty monotonous could you try to be a little more original!

Another example would be the perv on his porch smoking his cigar who loves to say, “I’d like that kinda ride”. This is him referring to Ayden and Brady in the double stroller. Don’t get me wrong it is a nice ride. But I’m fairly certain that is not at all what he means! I, at first found it flattering and then I just found him to be a completer creeper! Anyone , who seems to have a fetish over sweaty mothers pushing 75lbs. of kid up hill in the hottest part of the day is probably a whole boat load of wrong. I will now run on the other side of the street ! Thanks!

My last example would be the other runners, walkers, joggers, bikers, rollerbladers,etc….You are all some judgmental mofo’s! I mean ,even me! I would swear on everything holy that those skinny bitch runners pick up the pace with their shortie shorts and perky boobs just to piss me off. Walkers think you are trying to show them up so they slow down right in your path in hopes of tripping you. Bikers will ride right up behind you as if to say…get your slow fat ass out of the way! My favorite is the women I “know” Kevin pays to run by the house and make me feel guilty when I’m being lazy and having a beer on the deck! Bastards!

Having dealt with all this has made me decide that you can all get bent! I’m in it for long haul even if it is just so I have something else to bitch about!  

     So, as you can read not much has changed in my attitude. A lot has changed in my health. But I fully intend on getting back to running that hard and that determined so that I can blog about how I kicked the ass of running with Lupus, despite Lupus, and for Lupus.

Take Care of You....

Binging and Purging....

     For reals, let's clear this up right away, this is not me coming out with an eating disorder!  First, I like food & cooking way to much for all that nonsense! The size of my ass is a true testament to that! Second, I have enough health issues going on to add one more to it! I'm pretty sure if I started claiming eating disorders as well, people would either start calling "bullshit" or commit me for Munchausen.

     After my trip to the doctor on Friday, I wrote a sappy blog, had a minor emotional meltdown,  talked with a great friend,drank a bottle of Cabernet and took a shower . I felt so much better!  Dare I say, almost human! The hubs and I talked that night about what we could do this weekend around the house that would make me "feel better".  Since, I was talking smack about make the weekend my bitch, he figured we better optimize all the energy I thought I had. Two of the major things that needed to be done was swap the boys close from the fall/winter to the spring/summer and put away the laundry that had been accumulated over the last few weeks that I hadn't felt good. Being in a flare for as long as I have some times feels like the zombie apocalypse I grumble ,sleep, and look like death warmed over.  I figured those two chores would make me feel accomplished and like a contributing member of the human race.

   Saturday morning with coffees in hand we head to the attic to start pulling things out of storage. I first make the hubs promise that no judgments will be passed on me as we sort clothes out.  For the record, four boys accumulate a lot of things. Especially when their mother is a binge buyer. When it was all said and done there were a few things I noticed. I had enough soccer shorts to dress a team or six.  I apparently feel the same way about baseball pants because there are probably major league teams that do not have as many pairs as the boys do.  Finally, I have some obsessive need to purchase bathing suits because between the boys the least amount one has is three and the most one has his eight. The other two fall some where between there. Either way, there are a lot of swim trunks in this house!

     The season swap was done!  I was only slightly tired and seriously embarrassed at the fact I was feeling guilty because the boys "had nothing to wear". The things I let myself obsess over when I should be resting is ridiculous!  With all that done I felt good enough on Sunday to do some shopping and get some groceries. Trying to avoid putting away the mountain of clothes that a family of 6 make. I went into my room ( where the baskets were) to take a nap.  They were taunting me. My brain would not shut the hell up.  It kept saying things like "how can you rest in a mess like this" and "what if your mother-in-law saw this".  Obviously, my brain is a selfish bitch and didn't realize I needed a nap. In order to quiet the bitch in my head I started purging my drawers. Then I did the same thing to my closet.  If I'm going to put all the clothes away they got to go somewhere.

     After my amazingly cleansing purge, there was an enormous amount of space to put stuff away. Until my binge issue came back to the fore front.  I apparently think that tanks and cami's must be bought by the dozen. Because I have at least three dozen of them.  I also have a serious love for running shorts, yoga pants, and jammies. I did truly get rid of a lot, donated almost all of it , and hid just a few things. ( An infant Speedo, a pair of baby socks, a Lion King winter hat, and a ripped up tank from Vegas) I had to draw the line on some things!


    After my super productive weekend, I have sore everything. But it was worth it.  Still waiting on Dr.C to call with the results of my lab work. I'm not going to let that bother me though! I finally got that bossy bitch inside my head to shut up, so I'm going to take a nap.

Take Care of You...

2 for the price of one Friday....

     Well, fuck me running! I wasn't expecting this crappy of a Friday after the last few days I've had. I went from feeling good enough to enjoy a mid-week beer or 3 out with the hubs to experiencing damn near every Lupus symptom in the days since. Joint pain that no narcotic could touch. Fever and night sweats that had me shivering so bad that I only was certain it wasn't a seizure is that I was completely lucid. Hives and itchiness that even a enough Benadryl to knock out an elephant wouldn't  help! Fatigue all day and insomnia all night. Canker sores, nausea, and well you get the picture with out any more description! I felt less than stellar. I was going to wait it out. Figuring it had to give. Well, I gave in.

     I call my doc, Dr.C.  We have a pretty good relationship but he is very busy. When I spoke to receptionist and said she couldn't see me until next Wednesday, there were two options. I could either turn into "oh hell to the no, that is not going to work" or cry. I cried. I was broken. I couldn't muster up enough bad ass to be "that girl" so I was honest and just said I couldn't wait. I needed to be seen. On hold for 2 minutes and then I was given the 8:15 a.m. appt. Note to self, sometime you do catch more bees with honey, or in my case sobbing like a blubbering fool!

     The rest of the night consisted a lot of the same craptastic-ness. Me feeling guilty because the hubs is managing all four boys and both beasts. Running between two different baseball practices and missing games because for us it really does take two to run this circus! He did floors, yard work, fed and bathed them all. It really is through sickness and through health. Sometimes I have a hard time remembering that. Spent a little time with the all the boys and then the rest of the night tossing and turning praying for some relief today.

   Boy was I in for a shocker. Dr.C came in the office took one look at me and "you look like hell". Well, I sure do appreciate his bedside manner but I already knew that. He yelled at me for waiting for the few days to be seen. He griped about a few other things but mostly came to the conclusion that this Lupus thing is probably not  the only thing going on. He said in pretty clear terms that he suspects that I also have Fibromyalgia. WTF!  I'm like, ummm, no! There is absolutely no time for this. He agreed and apologized. He grumbled at the lack of communication he has had with my current rhuemmy and was going to give him a call later. Vials of blood were drawn, an EKG , pressure points for pain, a pat on the back and off I go til Monday.

     I'll be damned! Why is my body letting me down? Why is my body refusing to bounce back like it used to, like it should do?  The feeling of failure is devastating. I don't fail. Things generally come easy to me. Why is it set back after set back? Why is it compromise after compromise? I'm becoming so resentful and jaded. I feel angry and ugly on the inside. Why should I keep on working for this  state of health when I'm not seeing any positive results?  These are the things that in the deepest scariest parts of my mind and heart.

     My life with Lupus and possibly Fibromyalgia is a worthy cause and worth the fight. Hell, I've donated more time and energy into less deserving causes. I am completely capable of doing the same to myself, for myself, and for my family.  I'm on a mission to find a place for me and my health. A place to ease my mind, refresh my body and face another day with how ever many chronic illnesses I end up with. Too much truly matters to me to settle for anything less than that.

Take care of you....