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!
I did a Facebook live at 4 this morning, having not had much sleep due to massive pain and spasms from the cold, wet weather here in Louisiana.
It is very random and silly, I was sleep-deprived (I did have a few hours, not many), on pain meds and melatonin that had the opposite result of what they normally do- normally knock me on my ass and make me sleep but no luck this time.
It is rather hard to sleep through what feels like every muscle in your back/spine tightening, twisting, pinching, jumping, and twitching. It feels very weird and can also make the nerves in your insides itch a lot!
For those of you who may not be aware, I adopted a rescued dog from Acadiana Animal Aid. The papers claimed she was “beagle mix,” but people in public suggested “German shepherd, American Foxhound, a bit of Rottweiler, Tree Walking Coon,” as well as others have said she does look somewhat like a beagle. She was originally from St John the Baptist Parish Animal shelter, (an employee there gave her the name “Beignet,” and being from Louisiana and how sweet her personality is, I kept it because it fits her well.) However, when Louisiana went through that bad flood back in Aug. 2016, she was one of the rescues that were brought to Lafayette area by a no-kill shelter; Acadiana Animal Aid in Carencro. I adopted her on August 25th, 2016 ( a few mere months – May 1, 2016, after losing my last dog- a beagle Mya-Bella, 4 days before my birthday- she got out and hit on the road and I was devastated.) I had told my parents that I wanted a new dog as a Christmas present, but when I saw Beignet on the shelter website, I instantly fell in love. Fast-forward 4 years later and I still love her as if I have just gotten her. She is one of, if not the best, best dogs I ever owned. She has so much personality and makes me laugh. She loves to play(something my last dog didn’t do); she isn’t much of a snuggler except when it’s nasty outside- cold, wet/rainy, or if I am not feeling well- (its almost as if she has a sixth sense and can sense when I am hurting with my disabilities pains). She follows me everywhere like my shadow. She loves to go everywhere with me like my little sidekick. She is loyal and protective; Whenever I am roughhousing or play fighting with my family or my fiance- she will bark at them and sometimes she will get between us, trying to block them from me,) Whereas she barks nonstop at people walking in our yard/mail people or if we are in public and people are walking near our vehicle: On occasion when walking her in public places, she will growl at strangers protectively and I have to correct her, it is okay to be protective but she cannot be aggressive if she will be with me in public- as I am trying to get her trained to by my service dog.
Tonight, it is a brutally cold, wet night, and she must sense it because she climbed up next to the couch with me and had her head on my lap: as usual, I start scratching her behind her ears, but this time she sits up and leaned her head into my arm as I scratch her ears, and then leans her head against my shoulder/down onto my chest area. it was the most cutest thing ever!!! I love her so much and she makes me so happy. when I am depressed or sad, nothing can perk me up more than just snuggling my best fur friend or playing a nice game of fetch with her.
Her name fits her well, she is as sweet as a Louisiana beignet with tons of powdered sugar. ❤
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.
Warning: I am about to be really emotional and sappy. Mrs. Z, The director of Camp We Can Do until 2010, has been on my mind a lot lately. RIP. I miss her so much and she was a major influence in my life…
Imagine: Being an 11 year old girl with severe physical limitations due to Severe Kyphosis/Scoliosis and Ehlers Danlos Syndrome. Imagine feelings like you don’t fit in anywhere and that even though you have friends, you constantly question whether your existence is just a burden on your loved ones.
Imagine: Starting a new scary adventure; a summer camp, Something I had never done before aside from daily VBS for a week at Church. Even though, I knew that it was for Special Needs individuals like me, I still was stressing. I remember going shopping with mom for summer clothes; constantly coming out of the dressing room in each article of clothing, asking the same repetitive question “Does this hide my curve? Does my stomach in this? Do I look ‘Normal,” and God forbid if something I liked didn’t look good; Talk about “Dressing room Meltdown!” of locking myself in the dressing room, beating myself up by hitting myself in the face, on the arms, crying my eyes out because I just wanted to be “normal.” The first day of Camp finally arrived and I was so nervous and scared, I didn’t socialize with anyone, I kept to myself, and didn’t want to participate in any of the activities except kitchen and arts and crafts. When the camp group activity (where the whole camp got together to participate), Mrs. Z Noticed I was not participating and when she tried to get me to participate, I cried like a little baby brat about “I don’t wanna,” and “What if they laugh at me?” It’s like come on, they have special needs too. Why was I so self-absorbed? So ignorant? I am so embarrassed was back then. Mrs. Z let me skip that first day group activity, but we had a “come to ” talk where she explained that I would eventually have to participate and try to make friends, that no one would make fun of me and if they did, they would deal with her. Thanks to her and camp we can do, I came so much out of my shell (at least there) and did things, I never would’ve done anywhere. I did the talent shows, the girl makeovers; I made wonderful friendships, and even volunteered as a counselor after I turned 18. Had I not met Mrs. Z who pushed me to realize I was not limited by my disability, that I just had to find an alternate route and the statement/Motto of Camp We can do, “Yes We Can!” Had I not met Mrs. Z and the wonderful staff who were encouraging and supportive of the campers, I don’t know how I would’ve turned out. Yes, my mom always encouraged me, but I always figured “She’s my mom. She has to say that.” Coming from others, it’s a confidence builder? I 100% confident and in who I am? No. I still have some work to do, but without Camp We Can Do, (and Shriners in St Louis later on), I don’t know what my life would’ve been? I don’t think I would’ve flourished the way I have since starting Camp We Can Do and meeting Mrs. Z. She pushed me out of my comfort zones to explore other aspects life. I wish she was still around to witness my life and accomplishments, but I know she is watching over me, and hopefully I am making her proud. God bless you Mrs. Z, (and I am tearing up writing this), I miss you so much! There is so much I wish I could just talk with you about. I love you and hopefully, I can make you so proud of me. ❤ ❤
There once was a lady who was sweet and kind, She worked at Camp We Can Do, For quite some time. Her name was Evelyn Zehner,But to the campers at Camp we can do, Her name was “Mrs. Z” And she was loved by every camper, Including me. She never saw a handicap or Disability, She only saw children, who wanted to have fun, But could also be held accountable for every misdeed. She treated us all “normal”, Never made excuses for us.But loved us so much, that was evident. We were all her babies, Like a parent, Even when we were misbehaving, she still loved us. Every Morning we were given “good morning hugs,” Right as we got in the door, running into her open arms,We loved our “Mrs. Z,” Sometimes, we’d get in trouble just to go sit in the office with her; Or others, like me,Would just sneak away from group and peek into her office, Until she would catch me, I can still hear her saying,“Okay Jamie, I need you to go back with your group.”It was said so often, it should’ve been stamped on my forehead. The days always ended the same,As children’s rides would arrive, the kids would hug Mrs. Z tightly, She’d squeeze them with lots of love, And tell them “Rest well for more fun tomorrow.” Or “Have a good weekend,” Whatever the case would be. She knew what the kids were capable of, What they knew, how they knew how to play “sympathy card,” She was tough, but she was loving; Firm but Fair. She was big on teaching life skills. She knew these kids, That others counted out,Could learn these life skills, And prove something to the world;That they could be something with the right dedication and discipline. Sure some times, her methods seemed extreme and harsh, Maybe “too hard,” on kids who already “had such a tough life,”But I cannot recount a single kid who ever held a grudge;They always would hug her, and still knew her love for them. We learned how to cook in the kitchen, There would be people who came in to read stories to us, People who came to teach us healthy eating, nutrition, hand-washing, etc.We’d go to library, museums, They would teach us how to do grocery shopping,She knew that special needs couldn’t always learn just from textbook and memorization, We also had to go out and experience it, And of course, try and fail over and over till we got it. But she never gave up on us; she never counted us out, Ever! Sure, she is gone, And we are all sad, But her legacy will live on, In the memories and love,The impact she had, On thousands of lives. Fly High, Mrs. Z, You took care of everyone here on Earth,Now it’s your turn to enjoy some pampering,Up in heaven; you have definitely earned your angel wings, Sweet woman. Long Live, The advocate, the disciplinarian, and second mama, To everyone, especially children and parents from Camp We Can Do.
It was in 2008, when we went to Kemah boardwalk for the Camp’s big field trip. I wasn’t riding any of the rides; just watching all the other campers having fun. Mrs. Evelyn ZehnerEvelyn P. Zehner was the one who told me “your parents didn’t pay all the money for the big field trip just for you to be a spectator.” So She encouraged me to try a ride. I got on a tower drop (not realizing that I was terrified of heights), and I never been so terrified in my life, but I also am glad I did it. (isn’t it funny how something can scare you, but you are proud of accomplishing it anyway) Mrs. Z was always encouraging us to step outside of our comfort zones, and really thats what should be encouraged, because if we don’t, then how will we ever find out what we like or are good at …if we are counting ourselves out before trying, or scared to fail, then what kind of life is that? Mrs. Z had that tough love, but sometimes, that is the formula for success…not always the case, but sometimes. I think the lessons she taught us, and what many influential people in my life taught me, has influenced me into the person I am today. Yes, I still have some “kinks” to work out and smooth out, but for the most part, I am proud of who I am and I have Mrs. Z as one person to thank for that.
People often say “The world is a rainbow of different communities spreading love and good, frolocking with others. There are the ones who are the pessimistis who see their world as a never ending burden of turmoil and misery, and then the type that are the “fakers”- The ones who walk around all jolly and happy and wearing a complete “mask” in public. That is me.
I guess you are probably wondering “what is this going on about? The title says ‘One Mountain conquered, but life dealt me another summit to excavate.” What I mean by this is, I had my surgery to fix the broken rods and it was a major success, however during that surgery another issue was discovered; an infection in my rods.
Below are my newest X-rays.
To combat this infection issue, a pic-line was placed in my left arm while I was at Barnes Jewish Hospital in St Louis, Missouri, and put on antibiotics via IV infusions for 6 weeks and then will be switched to an antibiotic pill indefinitely until the doctor sees fit to get me off said antibiotics.
A week after my surgery, on Aug. 21, I was discharged from the hospital to go back to my home in Louisiana so that Medicaid would cover my IV antibiotics; if not, We would’ve had to pay out of pocket for the treatments and it was $120 a treatment (6 weeks of treatments, 2 x a day- so $120 a treatment x2 times a day x7 days x 6 weeks = $10080, and then if we stayed in s Louis but not at the hospital (haven house)= $50 a night x 6 weeks at least = $2100..yeah, I think we made the better decision by coming home…LOL)
Now 2 weeks and 4 days post-op, I awoke to my IV tape rolled up, the pic line area exposed (I am thinking that I was scratching in my sleep). When my fiance went to clean it up and re-tape it, he noticed that the pic line was out more than the doctors like, so we rushed to our local E.R., Lady of Lourdes Hospital. Once there, they were swift about getting me to the back; a nurse, however, decided to remove my pic line from my left arm (which was covered in red splotches due to allergic reaction to the tape) instead of leaving it for the specialist to push it back in. Hours later, the specialist showed up and had to re- stick me for a new pic line in my right arm now, when she said that had the nurse previously not removed it, they could’ve just pushed my other one back in. Now I am back home and my right arm is sore and throbbing because the lidocaine sedative is wearing off and my muscles are aching.
Oh well, I did what I needed to do and I will “grin and bear” this burden I have to deal with for 6 weeks until I can switch to my pill version of antibiotics. I cannot wait for this darn pic line to be out of my arm, but all good things come to those who wait. I will pray for God to grant me patience to deal with it.
I had my go fund me page since Jan or Feb. people have been generous and I thank them (especially the author of “Wonder” who generously donated $1000.) However, I share it constantly on all my social media platforms and a few people share it, but today made me so sick to my stomach.
I shared it a group on for people with similar disabilities and one of the members felt it was her responsibility to “set me straight.” – Evidence down below: Sally Hockman is a snooty and rude individual. She doesn’t know my story. She doesn’t know what I deal with on a daily basis. “Many people have broken beg for money,” but do these people happen to have great health insurance or doctors who take no matter the state? ….some people aren’t lucky!
so the latest on my back: I saw dr. Kelly today. He is very optimistic. His plan is if my rods aren’t infected (we did labs), he says he will just open the incision scar where my rods are broken at, clean up my wound, and add in some “dominoes” and add in some extender rods.” It will be “Simple and sweet,” as he put it.
:p The date is the same, August 14, but I need to be here by the 12th because I need to go to get my central line valve put in on the 13th. If he does what he wants, “simple and sweet,” he doesn’t think I will have as many complications like I did last time bc last time I had broken ribs and pneumonia from that which led to trach, blah blah blah…the framework already there, this is just some maintenance repair! LMAO. But whatever God’s will, will be done.
Jamie's Twisted Journey 