Long time, no blog. "Your hands still work, don't they?" asks the husband. Well, yeh! So far. Thank God! Just typing those harsh words makes me think . . . ASSHOLE! But alas, he is not. Quite the opposite really. Poor guy. He's been down lately. Have you noticed? I have. And why, you wonder? Great job. Good pay. Nice house. Sweet truck. Healthy kiddos. Parents both present and accounted for. What could have this guy down? One word for ya - me!
Enuff with the happy play by play of my goings-on. Since my failed LIBERATION, things had been looking up. HAD BEEN. HAD. Please note the past tense here. I fell at the hospital. Did I mention that? My dearest friend died. Did I mention that? I'm sure I did, but I feel like in order to better explain the state I'm in today I must elaborate.
I call her 'dearest' and not 'best' because Jason is my best friend. Sure, Jason sees and experiences all my suffering alongside me, BUT my Wendy . . . she knew first hand. We shared so much me and her. I'm not claiming to know what she went thru battling cancer nearly 15 years. I only know how it felt to want to do something and simply not be able to. Our plans of being Super Woman - crushed, daily. No Super Mom. No Super Wife. More pertinent to the situation, together, we recognized our loved ones sacrifices.
More than the pain and the disabilities of our diseases - we hated the affect they had on our loved ones most of all. Our sons' missing out. So much unfairly being thrust upon them. Made to grow up too much, too fast. Our husbands' willingness to take up the slack becoming, welll, quite frankly taking over everything . . . including caring for us. "Overgrown, unwanted babies," we had jokingly once called ourselves. Our poor unsuspecting hubbys. Niether knew they'd each have two children to care for plus adult-sized nearly helpless, . . . well, you get my point.
Wendy and I tried not to get each other down. In fact, after each time we'd talk on the telephone or instant message each other we'd each of us feel better about things. We'd share our woes and stories of how Jason did this or Kent did that. We preferred to feel sorry for them and our kiddos than feel sorry for ourselves. Afterall, we couldn't do anything for ourselves - but, fight the fight, right?!
Example: Kent had to drive everywhere. This bothered Wendy so. And, welllll. My license hasn't officially been taken away YET, but when's the last time any of you have seen me drivin'? Jason away on business, I felt all big time gettin' to take Abe down the hill to school. Yay, me! But had it been worth it? Would Jason have been more at ease had my mom or his parents just have come and got him? Yes. The answer to that question is yes! That futile little attempt at normalcy probably turned a few more of Jason's hairs grey a little earlier than scheduled. Ha! Who am I kidding? What hair, right?!
Anyways, I miss her. I miss her first-hand understanding. I LOVE YOU WENDY! I know. I know. Enuff already with the pity party. So the long way 'round to my point, then, heh? Point is, I haven't been myself since she passed. No? That's not the right way to put it. Let's try that again: MY CONDITION HAS BEGAN MORE NOTICIBLY WORSENING SINCE HER PASSING. There. Better? I'm deteriorating, people! This sux!
To recap ever so quickly these past ten years have been rough. From nearly not seeing, to not walking at all with cognitive issues mingled thru out I was just beginning to get into the swing of things. In denial while preggers with Asa I was determined to prove everyone wrong and beat this thing. I was an athlete after all. And an Orth. You can't tell me what I can't do!
Then 3 mo. old Asa's momma can't get off the couch?! WTF? Massive amounts of steroids and rehab. And she's back. Just in time to eagerly (yes, I'm attempting sarcasm here) start one of the immuno suppressant injection therapies. Yay, me. All was well for a bit with just weight gain and fatigue to contend with. And what new mom doesn't have that problem, right?
Then along comes Abel. Wow, was I ever sick carrying that kiddo. I even had to take high dollar nausea meds given to chemo patients. And spent as much time in the hospital as out . . . huh, he was a rough one. Finally he came a month earlier than scheduled. Was he o.k.? Yes. Phenomenal 9 lbs. 8 oz. preemie - the biggest they'd had in the NICU at that point. They only took him so they could start me on IV steroids immediately as my gait and vision were worsening. I'm sure I was quite a sight 8 mos. preggers stumbling around in the August heat like a boozer. I was smart enuff not to carry around 2 1/2 year old Asa, but couldn't hand off Abe as easy until of course a willing doc with a scalpel would intervene and remove the little bugger! Thanks again Dr. Walker!
I said quick re-cap, right? Anyways, came home feeling much better with Abe. My Aunt Agnes came to help me and my mom and dad had Asa. (I found out later that they had him, Amelia and Kyle had him, Grandma and Grandpa had him, and heck, maybe all of Pt. Township by that point.) Soooo, no horrible relapses following Abe's homecoming. Again, things were looking up. And back on the injections just in case. Bring it on MS. Is that all ya got? As Rocky said to Clubber, "You ain't bad. You ain't baaaad. You ain't nothin'!"
So from summer '03 to spring '10 I gradually declined physically and began tackling acceptance. As much as I despised this crippling MonSter the silver lining thus far had been that it appeared to be a slow but steady slope downward. Sure I wasn't getting to do all I'd hoped to do in life, BUT what I could manage to accomplish I was attacking with all the fire I could muster. I learned to make the most out of what I'd been given. In other words, prioritize!
For example, the sports the boys' didn't completely enjoy and or dominate the hell out of . . . we would skip and concentrate on the next season's offering. Why sit thru a hot baseball game when you can go to a cool football game where the team has nicknamed your eldest, "King Kong?!" I kid you not, they even had a V formation play to get the quarterback thru untouched in which my very own son led the V. The runner was told to get behind Asa and he'd be safe. YOU GO ASA! When's football start back up?
Admittedly there were ups and downs in that time including a few hospital stays, BUT relatively smooth sailing in the life of an MSer. To better define relapsing-remitting, the kind of MS I was diagnosed with, flare-ups happen and subside. Over and over. Different places. Different things. You don't know one day to the next what may be malfunctioning. For that matter, one hour to the next even. Sux, I tell ya. Sux.
So somewhere along the way I'd picked up a few things that failed to ever subside. My right leg. I drag it bad. Ever notice? If you answered, "no," then you're a liar! Or blind, I suppose. Anyway, sometimes its better than others but always dead weight. Somedays I don't have to lift it to get it in my jeans. Other days it won't even hold my weight. Any who . . . that's how it works 'til eventually more and more stuff won't subside and I'm a drooling bed ridden vegetable. So much to look forward to I tell ya!
Then father-in-law Kenny hears of this hullabaloo in Italy. And my failed local attempt at it brings a brief taste of health. It was so yummmmmy. My uber jealous hubby even worried, I'd up and leave him. Ha! He secretly wishes I would! And back 'round to my oh so elusive point again ----> the slope down this time around has not been so kind. Not at all forgiving. Somewhat treacherous. Hellish, even. Do I wanna talk about it? Great idea, BUT I can't remember my phone number people. No joke. Thank God I know my old one. So I can call my mom at least. I love you, Mom!
Now my left leg is acting up. He's taken on alot of extra work since my right one has been dying it's slow death, BUT that's no excuse for the shenanigan's he's been up to as of late. I shouldn't bitch I suppose as if he were to exit the same as 'ol righty I'd be in a world of motionless hurt. With that I'd be currently working on upper body strength and dusting off my wheel chair. I'm too hard headed for that route. My left leg is jumping and jerking. WATCH OUT KARATE KID! And it's not just failing to work with me - that bitch is working against me!
Feet flat on the floor I cannot raise the ball of my left foot off the floor. Not a real big deal while sitting. Then stand. Ha! Wish y'all could see me. I laugh at myself, and then pee, but that's a whole other blog!? I steady my right as best as I can then try the left only to have it refuse to bend at the knee. And what's this? Trying still for a forward momentum of any kind I find my left toe pointing down as if it belonged to a ballerina in training. Fine! We're still going to the bathroom, Bitch! But my more spasming right leg not used to all the stress . . .
You get the point. And my husband, welllll, he gets an awfully sore arm and back working as my escort. Poor guy. On to part two: Fireworks. Noticably down since the failed LIBERATION I thought a party might cheer him up. We'd just gotten the pool up. The 4th of July was approaching. A three day weekend. A nearly clean house, hmmmmm, perhaps I could call in the cavalry. Surely this would bring him outta his funk. [cross your fingers]
I think our little get together, ice cold pool water aside, was a success. Food was good. Friends were great. And we even made it to the fireworks. Now to clarify. Jason had to make most of the food himself. I'd planned simple macaroni salad and baked beans, but after straightening the house (or attempting to help to anyways) I wasn't getting around too well. I directed from my chair and he made it all. Then came the whole would she or wouldn't she be able to get in the pool? Would she need to pee once in? And how the hell will she ever get out without embarrassing herself? Without embarrassing her boys? Husband included!!! Just a side note: at the evening's end I was quite possibly the only of the Spindlers not to experience a wardrobe malfunction. So there! My suit's elastic may have seen better days, BUT you gentlemen . . . you have trunks with drawstrings! They are for tightening said trunks. Not just pretties!
Then there's the fireworks. Where will we park where Angela can see 'cause she sure can't walk. Here my friends is a prime example of missing out I'd mentioned earlier. If I'd felt better we'd have been out on the river in our boat for optimal viewing. Or gotten a blanket and trekked to the river front. Or at least a lawnchair in the park. Alas we were in a parking lot a couple blocks away and the boys confined to only the bed of the truck. The bed I might add that was faced in the wrong direction so their crippled Momma wouldn't have to leave her seat in the truck. Such a spoiled little princess I tell ya. As much as I love fireworks, I'd have much rather preferred the boys to better experience it. Again with the hindering of the loved ones! Can I get an AMEN, Wendy?
With all I had done at the end of the night, Jason seemed relieved it was over vs. sad it hadn't lasted longer. Maybe I was beginning to mis-read people as bad as I was mis-reading the swimming text on my lap top. That sux too as I love to read. Speaking of, Koontz where you at with a new book, bro? Any who . . . there's always tomorrow, God willing. And with that began the real 4th of July. Complete with homemade icecream. Sunday school. Church. And then a picnic in the Family Life Center. All that and I wasn't getting around worth a darn. Aunt Ann got my plate for me. Grandma got my drink. And Amelia helped me to the bathroom. So besides corraling the boys and simply worrying what would go wrong with me next - Jason had a bit of the day off from being my nanny.
Once home and bored to tears I began chatting with a friend on facebook regarding firework festivities for the evening. Reitz hill, he'd suggested. A movie, I suggested. It was a plan if we could pull the kiddos from the pool in enuff time and get Papaw and Granny to watch 'em. Yay. It all worked out as if some divine power had set it in motion. What's this? Theatre #13? Towards the back? Oh my! Immediately the vein in Jason's forehead begins to pulse. His eyes roll. "How are we gonna do this?" he asks. I decide to try for #13 myself whilst he gets in line for popcorn. And carefully following the counters and walls. Mindful and focused on each step I make it . . . fall free! And knowing me all too well, our friends were only in the second row.
Yay! Letting go of the railing in the dark to grasp at the chairs was the toughest part. The physicality of it sure, BUT seeing my husband's face with teeth gritted for me . . . that was rough. Had he gritted them at me angry I can't walk? Was he mad I no doubt was causing a scene? Was he embarrassed? Was he worried I'd fall? Probably all the above. It hurt me so that I was hurting him. And to all the other viewers whose previews I may have briefly interrupted . . . SUCK IT PEOPLE!!! And I mean that in the kindest of ways.
So then for the exit. Which for me always proves hardest after having sat 2+ hours in the dark. I'm always disoriented. Anyways, Ryan helps me to the back door - way closer than the entrance. And Jason makes his way out the front to the truck to come around and get me. Aggravated, no doubt, that I required his friends' help yet again. Newsflash here though dear: in the nearly 7 years we've been friends now I consider them my friends too. Just sayin' . . .
Then to Wendy's for some Jr. Bacon cheeseburgers and a potty break. Note to self: I must start forcing myself to use the handicapped stalls!!! All too often these days the normal stalls commodes are way too close to the ground. So I took a little while. The toileting itself had gone suprisingly well. It was the dismount that I lost points on. Ha! I tried to make a funny! Had it not been for my quick-witted ingenuity thinking to brilliantly use my cane hanging on the door from a hook to eventually hoist myself up from there, . . . welllllll, I guess I'd be blogging from the west-side Wendy's pee hole. What a vision! I know. Hope I didn't ruin supper for ya.
Then to Reitz Hill for Evansville's big to do. Or not! My gosh, look at the cars! I think all of Evansville and surrounding burghs had the same idea. Oh well. Can Ang walk at all? Of course not Jason hastily replies without even consulting me. A u-turn and we're headed home. And I get to hear about how he'd rather have stayed at home. And how having anybody over was prolly too much on me. HOLD THE PHONE! On me or on you, Jason? C'mon, Baby! We can't stop livin' now. Just know that as frustrated as you get with it . . . I'm even more miffed.
I'm not only the one with the problem causing the problem I'm also seeing the problem reflected back at me in the faces of anyone who gives a shit. Those who don't . . . welllll, I sure wish you could learn to just not care what they think. Really, Baby?! C'mon! Buck up, buttercup! So part three to this little entry: Footdrop. All I have to really say about this is FOOTDROP SUX!!! All this time I thought I had it, wrongo bucko! I gots it now by golly.
Wanna talk about it? Give me some pointers? My number is . . . ummmm, . . . uhhhhh. To hell with it! I can't remember. Pray for me please! I'm so needing it right now. And for Jason too. He's my rock . . . can't have him cracking! So call me, k? That is if YOU can remember my number. Love y'all!