peeks into my life dealing with everyday life and obstacles as well as obstacles of dealing with disabilities and accessibility obstacles, Chronic Pain due to broken spinal rods, living on pain medications, dealing with anxiety/depression, experiencing the newness of love, and fighting for my right to live and love my life in an ableist society.
My fiance and I had made plans to originally go to another parade this weekend, however upon waking up, my body decided to ruin that: sinus allergies, major migraines, back pain, and spasms; However, I found a way to not let it keep me down.
Sure, we didn’t go to the parade, but instead of moping and letting it ruin my day, I found a fun way to entertain myself; and all I needed was some mardi gras beads and my dog.
“How can that possibly be more fun than going out and socializing at a parade?” Well, as much fun as a parade is with the socializing and being with people, I wouldn’t have really enjoyed it because I was feeling so miserable with my health; but here at home in the warmth, I can have my own parade. Just me and my dog, who probably thought her mom had completely lost her mind. haha!
I took some beads and put on my pandora music and started dancing (yes I was hurting, but just swaying side to side and side-stepping, isn’t much to hurt), and took some beads and started throwing them around- once they landed on the floor, Beignet, would go over and sniff at them.
After throwing a few beads, I then took some and put them on Beignet like she had caught them. However, I think her favorite was when I brought out a light-up rubber boomerang I had gotten at the Rio Parade last weekend; In Hinds sight, I should’ve known she would love this item because she LOVES her frisbees! As soon as I pulled out the boomerang, that little nub of her crooked tail started wagging and her butt then began its “wiggle”. I tossed it to the couch a few times, but I didn’t wanna risk breaking stuff in the house, so we went into the backyard for a couple of tosses until I got too cold and was like “Okay B, Time to go in. We can play with the boomerang more tomorrow when the sun is out and hopefully warmer.”
As soon as we came in, I put the boomerang out of reach so that she wouldn’t destroy it (Power Chewer problems Lol) and she just sat near where I had put it out of reach and whined and whined until she realized I was not gonna relent and she went lay down and is now fast asleep.
Sure, I could’ve had some fun at the parade maybe, but I had a lot of fun here- just me, my fiance (who after helping me do some housework and he did yard work, is now enjoying his free time playing his video games), the cats outside in their warm (lighted) cat box/makeshift house, and Beignet- whose “mom” uses her for her own entertainment-but she knows I love her. ❤
Anyway, hope everyone else has a great rest of their weekend and remember: Don’t let life keep you down. Find a little fun in anything at all, smile, and that can turn everything around!
Being from Louisiana, I know a good party; and Mardi Gras season is not just about partying before Ash Wed. and lent season; No, not at all: to a child, Mardi Gras is a magical time where beads and candy are thrown from parade floats, getting tons of junk from vendors peddling carts that you don’t need but want, music and bands that you clap and dance around to. When you are a pre-teen and think you know everything, you go off by yourself with your friends (at least in Lafayette daytime parades). As an adult, this is not nearly as fun because you get pelted right in the face, (whereas when you are a child, the adults catch the beads, and if you were as spoiled a child as I was, many adults would catch and give beads to me.), when you have whiney kids begging and crying for the junk on the carts (karma is a butt LOL) or because they didn’t get any “catches” from one float or any “good catches” like toys and such (and for some strange reason, at least in my case, the older I get, the worse my anxiety and nerves get). Then there is also the yummy sugary goodness of the season also known as King Cake! YUM! King Cake is Mana from heaven itself (LOL Just kidding); in all seriousness, King cake is is a ring of twisted cinnamon roll-style dough topped with icing or sugar, usually colored purple, green, and gold (the traditional Mardi Gras colors) with food coloring. King cakes may also be filled with additional foodstuffs- the most common being cream cheese, praline, cinnamon, or strawberry, etc. King cakes also usually put a little plastic baby in the cake to represent baby Jesus; and in Louisiana, the person who finds the baby is required to purchase the next king cake.
Mardi Gras was so much fun for me as a child and I have many humorous stories about it. When I was a young child, Dad worked in Oilfield as a service manager or technician manager at Sola Communications. Sola Comm., as we often called it, would have an area for their employees to pitch a tent (or a few tents) and lay blankets on the ground in front of UL Lafayette’s Maxim Doucet building off of Johnson Street and across from St Mary Street. They would have so much yummy food, mostly BBQ, and chips and such (I had a sensitive stomach so I would usually bring picnic sandwich from home). There was a girl around my age (her dad worked with my dad); I can’t remember her name, but that was my play-friend for the parades: stood together for the parades, catching beads together, when parades weren’t going all (because we were there all day until early evening) we’d play chase or hide and seek from the adults, or we’d go walk down to the “junk on carts” with our money from our parents(She always made sure no one shoved or pushed me by accident, or any other way that I could’ve gotten hurt.) we just had a lot of fun together.
I remember one year specifically; I was in second grade, I believe: A lot of things happened that one year: My brother spray painted my hair green, I got a lot of beads (thanks to Jared, his girlfriend at the time, Dad, and some of Dad’s really tall co-workers). Dad scared the “be-jeepers” out of me, and Mom got so drunk that Dad had to put the child lock on the windows.
I remember we had 3 cans of colored hair spray: Purple, yellow, and green; I wanted purple, but Jared (being the jerk that he was at the time) thought it’d be hilarious to give me green hair instead; I was a brat, so when I saw what he had done, I had a full on meltdown: crying, hitting him, throwing stuff at him, etc. Mom was the same way she is now, “Jamie, it isn’t that big a deal,” (and I agree with her now that I am an adult), but I’ve always been one for being melodramatic about stuff (I’m a girl so of course I’m dramatic!)
Dad always loved to get me “all wound up” and aggravated (I honestly think, he believes that it is his one job in life), but this one year when I was in second grade, he honestly went overboard or maybe he was trying to teach me a lesson, I honestly don’t know; but, anyway, my friend and I were running around playing hide and seek behind the pillars near Maxim Doucet building: I had my back turned and was looking around, Dad somehow snuck up behind me and put his hands over my mouth like he was a kidnapper! (Talk about scary, right?!) I wriggled and kicked and squirmed, crying my eyes out; once he brought me near our spot, he put me down and turned me to face him. I was so upset! I was calling him a jerk and all kinds of stuff. He told me “that is how easy it is for someone to kidnap you! You weren’t even together (talking about me and my friend); separated from each other, makes it a lot easier to kidnap one of y’all!” Let’s just say, after that incident, I never wandered off too far without my friend being next to me.
On the way home that same evening, Dad had to put mom’s windows on Child lock. She had been drinking crown Royal Whiskey all day and was totally drunk! She must have thought she was in a parade or something because next thing we all know, she is throwing beads out of her window, into the tailgates of pickup trucks and pissing other drivers off: and making me cry in the backseat because she is throwing all of “my purple” beads; I didn’t care about the other beads, just don’t throw the purple, momma!
That was such a fun and funny Mardi gras, although going to parades with my godfather, his family, and his friends, is a lot of fun too! We once went to New Orleans for Mardi gras in 2006, right after Hurricanes Katrina and Rita—that was also memorable. We took my grandmother, Maw-Maw Verdine Meche with us, there was this big biker looking dude (later found out he was gay –but I hold no judgments against him about that, LOL) the kids and I were bored waiting for the parades, so we broke some old beads we found on the ground, and took the little ball beads and were throwing them at people; this biker dude played along and soon we were having a broken bead war—us against him and his friends. LOL! Another memory which was probably scary for mom was the fact, I kept wandering off to the front of the barricades (leaving them somewhere in the middle); there was this couple who were Latino heritage I think, and they would give me the beads they caught, along with one of the older grandparents who still could move and dance without breaking a hip, would try to dance with the high school dancers ( I think he was pretty drunk!), but we ended up with a lot of beads and “good throws” that year. Do You want the big stuff? Go to New Orleans for Mardi gras!
We are all from Louisiana, so we all pretty much know how to have a good party; Just have the right food, the right music, cute kids, and lots of drinking and king cake….hell, sometimes, you’d think our party was the parade with the lot of us all dancing! Like we say in Louisiana, Laissez Les Bon temps roulez, which is Cajun French for “Let the good times roll,” and in Louisiana, we do just “dat!”
It’s officially December and I am not in the Christmas spirit like usual. Usually, I would be going all out with decorations and such, but not this year- maybe lights and that’s it. Due to moving in Jan. We don’t want to have to haul extra stuff than what is needed. Plus, it will be the first Christmas without Mommie, Mr. Mike James, my cousin Racheal Mary Meche, Ms. Nancy Moticka
It has been too much death in one year; not to mention all the other I care about who isn’t around anymore either- My other grandmother (maw), and then one of the most influential women in my life, Mrs. Evelyn Zehner, “Mrs. Z” from Camp we can do. It’s just so hard… I know there are worse people off, but for some reason I just cannot get into the spirit yet this year. Is it because of not decorating much this year, the financial stresses and having to ask mom to loan money for us to buy Christmas gifts until David can find a job? I don’t know. Just tired of always being miserable. I can’t remember the last time I was sincerely happy for more than a few hours.
😥 I don’t know, I just been depressed all day today. Hopefully, I can get out of this funk. Prayers appreciated. I hate it when I get depression.
There’s been a mutual decision between David Piazza and I after all of us discussing things over with Mom, to push the wedding back another year. So it’ll be may 2021.. we haven’t gotten much done as far as planning and in Catholics churches, need to let church priests know 6 months ahead of event.. That’d be next month, plus we’ll be moving into my parents’ house the beginning of 2020. Plus this way, I’ll be over a year post-op and better able to plan and enjoy it. Sorry for any disappointments but tis life ❤️❤️❤️🤷 we feel this will be better in long run.
A bad storm passed through Louisiana this week so it has been quite a bit of sleepless nights for me lately and then add in the dreaded once a month bullshit us females have to deal with, adding in stress, anxiety, hormones, emotional roller coaster, all that (sarcastic tone) “fun.” Tonight, I tossed and turned for 2 hours while my fiance’ just lays next to me snoring; sure, I could wake him up and make him suffer with me, but that is selfish plus he works to provide for us, so I guess he needs the sleep more than I do, but it sure would be nice to be able to talk these things out instead of blogging them.
I have a mattress that can elevate the head, it helps with migraines and sometimes my upper back (then I gotta deal with my lower back and hips hurting), but tonight my upper back is hurting and I am not even gonna use the head-elevation because lately it has been making my fiance’ back hurt in the morning; which sent me down the dreaded “rabbit hole” of the uncertainty of a future together: What if I become bed-ridden, what if he has to help me with everything more than he does now? That isn’t what he signed on for! It isn’t fair to him. I know he made a commitment to me and he constantly reminds me of it anytime I start crying and freaking out about how much pain I am in and the fears that sends into me about how uncertain my life and future are; I just don’t want him to have regrets or resentments. I love him, I really do, but when these fears kick in, I go into flight mode and tend to push him away, thinking I am saving him from being stuck in a sucky future with me and my damn disability. How can I expect him to accept it and what it does to me, if I cant even accept it completely myself?
If there was a pill created to make me “normal,” like everyone else in society, I would take it! Even though I also feel like having my disability has made me a well-rounded, wise, empathetic, compassionate, supportive, loyal, passionate person. Does it make me a bad person? Why is it I can be a support system and cheerleader for others with disabilities but yet I cant even accept myself completely? Does it make me a hypocrite? Maybe its just the pain talking; well the pain and the damn devil. I need to really work on myself and loving myself for me; whole-y and completely. Maybe after my surgery to fix my rods, maybe my pain will be better, and I can start being happy again. One can only hope.
The last week or so, I been having stomach problems. First, my fiance’ niece was over here and any change in routine and my stomach routine goes out of wack (constipation). I was hurting more in my back and hips, lots of belching, bloating, nausea, decreased appetite, and gas; so I thought maybe it was due to constipation, however, once I did get back on my bathroom routine, I still had problems continue.
when I am hungry, I get nauseated, and once I eat, it chills out for a little while, unless I overeat, and then nausea comes back. I still have decreased appetite, craving more sweets, still belching a lot, still got a lot of bloating and gas, and at least my pain in my back and hips has returned to its normal-pain levels.
Yesterday and Today, it was BBQ lunch I had yesterday and then I also had red velvet cake today, so my stomach is really hurting and gurgling 😥
August cannot come fast enough. I think that is a lot of my issues- the broken rods, my Kyphosis getting worse again, putting pressure on my tummy. 😦
the latest update from my Scoliosis Journey: St Louis (Dr. Kelly’s office) called. He still bouncing around about the simpler (just fixing surgery) or the bigger surgery. I told them Dr. Lenke said he was gonna talk to dr kelly and how he (Dr. Lenke) suggested the smaller surgery. Apparently, he hadn’t talked to him yet, or the nurses weren’t updated. 🤷♀️The nurse made a note and said if we do the smaller surgery, the date she has is Aug. 14(two days before the anniversary of my surgery in 2012) and the pre-op appointment would be July 16. They want me to do a pulmonary Function Test (I am having them fax the orders to my gp- because my Respiratory Doctor said and I quote “didn’t see it as a necessity” because more than likely they would “do one before surgery,” and I “have my CPAP machine this time.” 🙄
in other news, I went to a pain management appointment on Monday, April 29. It was okay aside from spending all day there. It was just a consult. Typical dr. appointment- xrays, weight, and height, looked at my back, tested my reflexes, all that boring medical stuff. lol. I go back on May 28.
Also, Still fighting with that stupid wound on my incision- it opens, almost fully closes, then reopens. It’s oozing bad the last few days, going to wound care today at 1. The wound probably will keep giving me issues until I get the rods fixed. 🤷♀️🤷♀️🤷♀️
I’m just got off the phone with Dr. Kelly’s office in St. Louis. They offering two surgeries. One to just revise surgeries. And one to take a bone out of my spinal column area and make me straighter. Longer surgery would be Sept. Smaller surgery would be August.. Longer surgery would give better balance. She’s gonna talk to dr Kelly again.hes out of town right now, so it’ll be sometime next week. Smaller surgery , if I’m not balanced enough, rods could break again. But longer surgery is messing near my spinal column and could paralyze me #decisionsDecisions 🤷♀️🤷♀️🙏🙏 I dunno. I mean id like to be straighter and not risk rods breaking again, but also like being able to walk and stuff. And also don’t wanna risk another trache.